Hindsight is 20/20

Hindsight is 20/20 right?

There are so many things I wish I could tell this woman in the weeks after Eva was born.

DSCN0454

I don’t know if I would have listened, but I would have liked to have tried. Some of these are things people did in fact say to me, but I didn’t believe them. I felt like some of the things people said felt ridiculously optimistic. Optimism to the point of naivety and foolishness. It felt like believing them was fooling myself. I was delivered one piece of bad news after another and it felt like when they gave me the worst case scenario there was no reason to believe it wouldn’t come true. It felt like pinning my hopes on anything else was another way to have my hopes dashed, and I had done too much of that already.

Every child is different. Every child with special needs is different. Every child with CHARGE Syndrome is different. So there is no way of knowing. But I still wish I could have slapped myself around a little and offered up a few words of advice.

Starting with:

1. The doctors won’t always be right.

In fact, often, they will be wrong. Sometimes they’ll be wrong in bad ways, like when they told you Eva might be able to see with an operation only to discover upon closer inspection under anaesthetic that operating would do nothing to help her. But often, they will be wrong in ways that prove to be good. Because Eva will prove them wrong. They will give you the worst case scenario. They are estimating, guessing and pointing at a future they know no better than you do. While optimism might feel impossible and wrong right now, don’t give in to despair at all their words. They have to paint the worst case for you to keep your expectations low, but Eva is her own person. She will prove them wrong in the most delightful ways.

Doctors are just people. They are not gods. They do their best, but they cannot predict everything or get everything right.

2. Your love for this girl will grow so large you won’t care what she can and cannot do.

I know you have hit a wall. I know you feel you cannot do this. You are staring into an unknown future by yourself with Eva and you are scared. You already love this girl, that’s why so many tears have been shed. But what you don’t know is that you will grow to love her so much that her issues and disabilities won’t matter. You will get to a point, quite soon in fact, where you will see that worst case scenario and while you wish you could make it easier for Eva, you will not be afraid of it. You will love her no matter what. There will be no conditions, it will be unconditional. The worst case scenario will not feel like the end of the world. She is your daughter. It will be hard, sure. You will be tired, definitely. You will feel torn in multiple directions, but under all that you won’t really care, because you’ll have Eva. Sure you’ll always want things to be easier for her. Better for her. But you will love everything about her. So much so that the issues she faces will fade away. You are picturing feeling burdened and trapped and as if parenting her is a life sentence, but you won’t feel that way. I know you won’t believe me, but give her a chance and you will see she makes you so much happier than you could have thought. Your life will be different than you imagined, but in a lot of ways it will be better.

3. Your relationship with Eva’s dad is about to end.

Don’t fight it. You both need to make the decision that is right for yourselves. Try to clear your head, and put Eva first.

4. You can take a break.

You shouldn’t feel bad for that. It’s what you needed to do to be with Eva. But don’t wait too long. Eva’s time with you is not going to be long and you may look back and sorely miss the weeks you spent without her in your arms.

5. Trust yourself.

You are confused right now but in your heart of hearts you know what you want. Go with it. It will be hard, but you can do it. You don’t have to be that special Mum you think you do. Eva will turn you into that person.

6. You are imagining yourself alone. You will not be alone.

You will be surrounded and supported by so many people, both close to home and further abroad. You will feel loved by many and while it is you in the waiting room with Eva, you will feel buoyed by the support of many hands. Your family. Your friends. Eva’s Dad. Eva’s dad’s family. They will all step up and be an important part of Eva’s life. You will not be doing this all by yourself.

7. Eva will amaze you.

This is one heck of a girl. On a daily basis she will show you her spirit, grit and determination. She will smile for you and laugh and show off her strength. She will never stop surprising and delighting you. She will wait for you and love you no matter what. But even if she never smiled, or pushed up on her hands, or rolled, you will still love her just as much.

8. Eva will change you for the better.

I know you will be thinking, no, I’m fine the way I am. No, I don’t want to be changed. You will be picturing some saintly woman who is not you. You will be imagining the mothers of special kids who don’t complain. Who get on with it. Who sacrifice their lives for their children every day. You don’t need to be that woman. Who you are is fine. You can do this. Eva needs you, not a saint. Eva will change you, but you’ll still be you. You’ll just be seeing things and people differently. You’ll appreciate life more. You’ll be able to see more clearly. You’ll be you but with better glasses.

9. Make Eva happy.

She’s not going to be here long so let her stand when she wants to stand. It won’t be great for her hips, but she loves it. You’ll feel happy you let her stand and bounce and kick when she’s gone.

10. Fight for her.

There will be times when you disagree with the experts. Go with your gut and fight for her. It doesn’t matter if you have to talk through tears or sob your way through an argument, if you think something should be done differently, speak up. You will never regret each time you do.

I know you won’t listen to me, but I wish I could shake some sense into you. You’ll get there eventually. You’ll figure it out by yourself.

But it sure does hurt to look back and wish I could have figured it out sooner. Wish I could have sped things up so I wasted less time. Cried less tears while Eva was still alive.

I can’t change the past and I know I wouldn’t be the person I am if I hadn’t gone through that. I might not have come to the decision I did if I hadn’t done the things I did.

Hindsight is 20/20 and sometimes the clarity is painful.

Eva’s service

It’s the day after Eva’s funeral. The guests have gone. The speeches have been written and read and I am alone for the first time in days.

It feels good, after all the activity, to just sit and think about Eva, without any distraction. It hurts. But it feels good.

peanut1

I’m sitting here typing with tears rolling down my cheeks, trying to sort my thoughts out.

The service yesterday was lovely. Eva’s Dad spoke, as well as her paternal grandfather, her maternal grandmother, Ess and myself. My younger sister put together a video of photos and video footage of Eva to the tune of The Rainbow Connection.

Eva’s indomitable spirit and zest for life were mentioned by every speaker. Along with her NG tube pulling skills and room-lighting smile.

My Uncle, who is an Anglican Priest, lead the service and did a wonderful job.

The chapel was overflowing and some had to watch the service from the screens outside.

Family from around New Zealand and the world were present, from both sides of the family. New friends with special kids made it too.

I was incredibly humbled, and continue to be so, by the outpouring of love and support Eva and I have received. Knowing her short life touched so many really does help to ease the pain of her passing. Nothing will replace her, but knowing that she will be remembered all over the world is a comfort.

When Eva was born a nurse told me I had become part of a club I never signed up to be in. I was in the club of parents of special kids. I  struggled to come to terms with that club and being a member but I feel for the last half a year I had a grip on it. It feels pretty unfair that when we finally raised our heads above the parapet we have been forced to join another club. One I also never considered I would join; the parents of children who passed away too young.

My thoughts are a jumble today. I will continue to write as I sort through them and work my way through this process. Thanks again for the kind words, the lighting of candles, donating to CHARGE and even for just reading this blog. I’ll finish with my words from the funeral. I was proud to say them for Eva, and happy I managed to get them all out in an audible way.

 

I have written so many words for Eva but when I went to write this, words failed me.

They failed me because Eva was bigger than words. She was pure emotion. She loved fiercely and I loved her fiercely. Eva knew what happiness was and she knew how to show it. She reached out and embraced life and everyone in it, without question or fear. Despite not being able to see or hear she grasped onto you and told you what she wanted. She took part and communicated even if she spoke a different language.

Eva will never know the impact she made on me or on the world. She was more than just a baby with CHARGE syndrome. She showed me and so many others how to live. How to embrace joy and how to be in the moment.

Everyone who met Eva was touched by her bubbly happy personality, her determination and her willingness to love and be loved. If everyone could have a little bit more Eva in their lives, I think we’d all be better off.

It feels very wrong that Eva was taken from us, but I will not let her short life be a waste. She has changed me in ways I could never have foreseen and I will endeavor to ensure I continue to live in the way she taught me. I will make the most of my life and try to be the best person I can be. To others and to myself.

There’s too much to list about what I will miss about Eva, but here’s a start.

I will miss our early morning cuddles.

I will miss her baths which were getting more and more boisterous.

I will miss her hot little mouth trying to give my arm, neck or cardigan slobbery kisses.

I will miss seeing her squirm in delight when she realised it was morning and I had come in to pick her up.

I will miss her smiles and giggles.

I will miss her squawks.

I will miss her sense of unquestioning entitlement to every forehead swirl she could get her hands on. And the delight on her face when she got what she wanted. Which was always.

I will miss seeing her reach hard won milestones that others take for granted.

I will even miss seeing her NG tube strewn around her cot in the morning because she has pulled it out for maybe the third time in a day.

I will miss you, Eva.

Eva’s journey, and my own, has not always been easy. I have wavered and fallen a few times, but Eva has remained solid. And has waited patiently for me. I am so glad we got the time we had together and only wish we had had more.

In spite of her short life I will be forever grateful for having Eva in my life at all.

I wanted to finish with something that I think encapsulates where we all go from here. Because if we have learned anything from Eva it is that we make the most of today and all the days after it.

 

Oh, the Places You’ll Go! 

Dr. Zeuss

Congratulations! 
Today is your day. 
You’re off to Great Places! 
You’re off and away! 

You have brains in your head. 
You have feet in your shoes 
You can steer yourself 
any direction you choose. 
You’re on your own. And you know what you know. 
And YOU are the guy who’ll decide where to go. 

You’ll look up and down streets. Look ‘em over with care. 
About some you will say, “I don’t choose to go there.” 
With your head full of brains and your shoes full of feet, 
you’re too smart to go down any not-so-good street. 

And you may not find any 
you’ll want to go down. 
In that case, of course, 
you’ll head straight out of town. 

It’s opener there 
in the wide open air. 

Out there things can happen 
and frequently do 
to people as brainy 
and footsy as you. 

And when things start to happen, 
don’t worry. Don’t stew. 
Just go right along. 
You’ll start happening too. 

OH! 
THE PLACES YOU’LL GO! 

You’ll be on your way up! 
You’ll be seeing great sights! 
You’ll join the high fliers 
who soar to high heights. 

You won’t lag behind, because you’ll have the speed. 
You’ll pass the whole gang and you’ll soon take the lead. 
Wherever you fly, you’ll be the best of the best. 
Wherever you go, you will top all the rest. 

Except when you don’ t 
Because, sometimes, you won’t. 

I’m sorry to say so 
but, sadly, it’s true 
and Hang-ups 
can happen to you. 

You can get all hung up 
in a prickle-ly perch. 
And your gang will fly on. 
You’ll be left in a Lurch. 

You’ll come down from the Lurch 
with an unpleasant bump. 
And the chances are, then, 
that you’ll be in a Slump. 

And when you’re in a Slump, 
you’re not in for much fun. 
Un-slumping yourself 
is not easily done. 

You will come to a place where the streets are not marked. 
Some windows are lighted. But mostly they’re darked. 
A place you could sprain both you elbow and chin! 
Do you dare to stay out? Do you dare to go in? 
How much can you lose? How much can you win? 

And IF you go in, should you turn left or right… 
or right-and-three-quarters? Or, maybe, not quite? 
Or go around back and sneak in from behind? 
Simple it’s not, I’m afraid you will find, 
for a mind-maker-upper to make up his mind. 

You can get so confused 
that you’ll start in to race 
down long wiggled roads at a break-necking pace 
and grind on for miles across weirdish wild space, 
headed, I fear, toward a most useless place. 
The Waiting Place… 

…for people just waiting. 
Waiting for a train to go 
or a bus to come, or a plane to go 
or the mail to come, or the rain to go 
or the phone to ring, or the snow to snow 
or waiting around for a Yes or a No 
or waiting for their hair to grow. 
Everyone is just waiting. 

Waiting for the fish to bite 
or waiting for wind to fly a kite 
or waiting around for Friday night 
or waiting, perhaps, for their Uncle Jake 
or a pot to boil, or a Better Break 
or a string of pearls, or a pair of pants 
or a wig with curls, or Another Chance. 
Everyone is just waiting. 

NO! 
That’s not for you! 

Somehow you’ll escape 
all that waiting and staying. 
You’ll find the bright places 
where Boom Bands are playing. 

With banner flip-flapping, 
once more you’ll ride high! 
Ready for anything under the sky. 
Ready because you’re that kind of a guy! 

Oh, the places you’ll go! There is fun to be done! 
There are points to be scored. there are games to be won. 
And the magical things you can do with that ball 
will make you the winning-est winner of all. 
Fame! You’ll be famous as famous can be, 
with the whole wide world watching you win on TV. 

Except when they don’t. 
Because, sometimes, they won’t. 

I’m afraid that some times 
you’ll play lonely games too. 
Games you can’t win 
’cause you’ll play against you. 

All Alone! 
Whether you like it or not, 
Alone will be something 
you’ll be quite a lot. 

And when you’re alone, there’s a very good chance 
you’ll meet things that scare you right out of your pants. 
There are some, down the road between hither and yon, 
that can scare you so much you won’t want to go on. 

But on you will go 
though the weather be foul 
On you will go 
though your enemies prowl 
On you will go 
though the Hakken-Kraks howl 
Onward up many 
a frightening creek, 
though your arms may get sore 
and your sneakers may leak. 

On and on you will hike 
and I know you’ll hike far 
and face up to your problems 
whatever they are. 

You’ll get mixed up, of course, 
as you already know. 
You’ll get mixed up 
with many strange birds as you go. 
So be sure when you step. 
Step with care and great tact 
and remember that Life’s 
a Great Balancing Act. 
Just never forget to be dexterous and deft. 
And never mix up your right foot with your left. 

And will you succeed? 
Yes! You will, indeed! 
(98 and 3 / 4 percent guaranteed.) 

KID, YOU’LL MOVE MOUNTAINS! 

So… 
be your name Buxbaum or Bixby or Bray 
or Mordecai Ali Van Allen O’Shea, 
you’re off to Great Places! 
Today is your day! 
Your mountain is waiting. 
So…get on your way! 


Everyone who met Eva I think will agree, that kid did move mountains and will continue to do so even after her death.

How to remember Eva

I just wanted to pop in here quickly and say thank you. Since my last post, and Eva’s death, I have received a huge amount of support from old readers and new. I have seen tributes to Eva pop up all over the place and each of them fills me with pride that Eva touched so many lives.

Some other friends have done some fairly amazing things in Eva’s memory and I just wanted to share these too, in case anyone was interested in taking part.

I had asked for people to consider donating to the CHARGE Foundation in lieu of sending flowers, and an online friend set this up through the CHARGE Foundation website. This allows you to donate to the CHARGE Foundation in Eva’s name. The page has already raised over $1000 and it makes me so happy that Eva’s life could help other little babies and kids with CHARGE. When Eva was diagnosed I found I was the one explaining CHARGE to various doctors and therapists. If all you do is go to the site and read up about CHARGE that would still be fantastic.

Another online friend has arranged an worldwide candle lighting for Eva to coincide with her funeral in New Zealand. This is her text from facebook:

“The celebration of Eva Prebble Higham’s life will be on Monday, March 2nd at 2 pm in New Zealand. That moment for us here in the US will be Sunday, March 1 at 8 pm (EST), 5 pm (PST). I’ll be lighting a candle at 8pm Sunday night in Eva’s honor and memory. Please light a candle, take a picture, and share it on social media with the hashtag ‪#‎theoneinamillionbaby‬. Please share this post on your wall and spread the light and love for Eva.”

11034211_10205273763837761_6740460920140894748_n

This post reduced me to a sobbing mess, in the best possible way. My sadness for Eva’s passing feels immense and immeasurable, but it does really help and feel comforting to know that there are people all over the world grieving her too. That in her 10 and a half months she made a difference in this world. Something many cannot claim after 30, 40, 50 years. She was one in a million and it means so much to me that she will be remembered by so many.

Thank you everyone for your kind words, for your thoughts and prayers, for everything you have said and done since Eva’s death. People always say they don’t know what to say in times like this, but so far everyone has said exactly the right thing and even if you stumble, I appreciate the effort.

Thank you!!!

Goodnight Eva

What a difference a day makes.

Yesterday I was excited about Eva’s new high chair and today there is no Eva to sit in it.

Last night at around 9pm Eva woke crying. Both I and my amazing and brave housemate Ess went into comfort her. Ess passed her to me and we could tell something wasn’t right. Eva was taking great gasping breaths. Then suddenly she stopped.

She started to turn purple around the lips and it was at that point that Ess took over, putting Eva back down and starting chest compressions. We kept going until the ambulance and fire trucks arrived and then they took over. By 9.30pm they gave up and let my little girl relax.

A simple cold one day, and gone the next.

I don’t have clever metaphors today. I don’t have creative flow or inspired words. I have all encompassing grief that abates briefly to leave me numb only to return a little stronger than the last time.

I cannot get the image of Eva in her new highchair, swinging her legs and smiling, out of my head. That girl knew how to live.

I have never felt so sad in all my life and I’m not quite sure how one is supposed to keep moving when something like this happens. My legs, like when Eva was born, feel filled with lead. I am moving in slow motion, desperately trying to turn back time.

Eva, you will be missed by everyone who knew you. I love you more than anything and feel a hole in my chest where you used to reside. I hope you knew how loved you were and wherever you are, that you’ve found someone to give you forehead swirls to your heart’s content.

Goodnight, sweet girl.

My life has been better for having known you.

Our last photo together

Our last photo together

I think I might need a new car

Months ago Eva’s physio ordered Eva a whole lot of equipment. It arrived today and I only managed to get 3/4 of it home in my car.

Eva is the proud owner of a shuttle seating system. It comprises of a seat with adjustable lateral supports, head supports and a five point harness. It comes with a base that resembles a lunar landing pod that turns the chair into a high chair, as well as a pushchair base.
20150225_175411[1] 20150225_180959[1]

We also got a new car seat which allows for lots of lateral support, and a chair for the shower which resembles a baby sun lounger.

With Eva’s original pushchair and carseat in the car it was a tight squeeze and I had to leave her buggy base at daycare until tomorrow.

As we drove home I looked in my rear vision mirror and saw only Eva’s equipment. I couldn’t even see Eva’s face in her mirror.

I think I need a bigger car. And to start lifting weights.

Her gear is only going to get bigger and heavier.

Another piece of equipment which is bringing me a lot of joy but for different reasons is her new feeding clamp. When we were at the hospital last week I was feeding Eva in the foyer after her appointment. I had attached the syringe to her pushchair with a rubber band but I didn’t trust it so was holding the syringe over her pushchair by hand. A man stopped by me and told me he worked with kids who are fed through gtubes and NG tubes and that if I went to a hardware store I could buy a clamp which would attach to most things. I thanked him for the tip and the next day Eva and I went in search of a clamp.

I’m not sure we got the best possible clamp for the job, but it has certainly made life easier already. Here it is attached to a picture frame above Eva’s cot so I can feed her in bed without hovering over her bed.

This is probably exciting to no one but me. But still.

This is probably exciting to no one but me. But still.

So we have a $3 piece of equipment I am feeling rather proud of, and another worth thousands of dollars so Eva can sit up and take part in her world. Both will change how we live on a daily basis.

top_mommy_blogs_signature_banner (1)

Something kind of awesome

In among the chaos of working and caring for Eva and arranging her appointments and surgeries, something kind of awesome is happening. Even writing this post is making me blush.

I’ve met someone who is pretty great. I had been imagining myself in my late 30s, 40s, 50s, with just Eva and a collection of canines to keep me company. I saw myself getting older but I never pictured there being anyone else there. I would be well read and well versed in binge TV watching, but without a significant other.

This thought had initially terrified me. I have never hated to be single, but that was because I always assumed I would meet someone eventually. There’s a blind faith that accompanies your teens and 20s where the thought of being alone for good just never crosses your mind. You feel young and your whole life is in front of you.

I’m 31. I know I’m not old. But when you find yourself single, at 31, with a baby with special needs, it’s difficult not to see that as a bit of a dating obstacle. People said to me that it would weed out the bad ones. That Eva would be my filter for assholes. She certainly has provided that service for me already. My concern was that it would weed out every one. That it was an ask too big for even the good ones. I mean, come on, it was almost an ask too big for me.

I had made my peace with that though. I had decided I had one child so if I didn’t have anymore that was fine. And with that pressure off my ovaries I felt much more relaxed about the issue of a potential partner. I could meet someone when I was in my 40s or 50s. It didn’t need to be now, because I didn’t know if more children was something I even wanted. And let’s face it. For women in their 30s, being single is scary because of that cliche’d biological clock. If that thing wasn’t ticking loudly and publicly over our shoulders we would all be a lot more chill about whether we had a plus one to our friend’s wedding.

I was feeling happy and content and looking forward to our life together.  I was close to narrowing down the dog breed we would buy. Eva and me. I wasn’t looking around for more.

They say it always happens when you are least expecting it right?

Well someone pretty fantastic wandered into our lives.

He’s smart, funny, and handsome with just the right amount of snark. But more importantly, he’s good to me. He respects me and my opinions and wants to hear what I have to say. He cares about me and does nice things for me and he’s great with Eva. He really likes Eva. Thanks to him, she now has a growing addiction to forehead swirls and a fascination with beards. He’s the kind of guy who after just a couple of months of dating, offered to stay with Eva in the hospital after her surgery so I could have a break. He’s pretty great.

I’m not saying I’ve met Mr. Right. Or even that I know what’s around the next bend. I’m not claiming that my life is sorted or that I will never be by myself again. I’m just excited about right now, and happy that when people said my situation wouldn’t be an instant initiation into spinsterhood, they were right. I’m happy that there are people out there that can see past our situation and see who Eva and I really are. I feel confident in myself again for the first time since well before Eva was born. I feel like I deserve this. I deserve to be treated well and respected. I deserve a bit of fun and romance.

I’m not looking into the future to next week or next month. I’ve learnt that it’s an illusion to think you can see that far ahead. I’m just trying to enjoy every date for what it is, and soak up the pleasant stomach flips that accompany it all. I’m putting no pressure on myself or on him. No pressure on us. I’ve got enough of that in the other areas of my life. I am enjoying today and looking forward to the weekends.

On top of all that, I’m really just relishing having someone to binge watch good TV with. Eva’s cute as all get out, but she’s rubbish at witty banter and TV commentating.

top_mommy_blogs_signature_banner (1)

Murphy’s Law at its best

Eva is booked in for surgery next Tuesday. Today is Monday. Eight days away.

So you can imagine my utter disappointment when after months of no health issues, no coughs, no spills, no runny noses or lung issues Eva starts sniffling and coughing on Saturday. It’s Murphy’s Law at its best. Her breathing regained the rattling that I had almost forgotten and her sharp cough echoed through the baby monitor. I struggled to get her to keep her feeds down all day on Saturday.

On Sunday she kept everything down but still coughed and sniffled.

Today, she made it through daycare, pretty happy, but still coughing. I emailed her paediatrician, unsure if we should be pulling the plug or waiting to see if she rallies and comes right. Her advice: wait till Friday and reassess then. If she’s still coughing and sniffly, call the hospital and see what they want to do.

So we go with that plan.

I’ve been trying to be philosophical about it. Afterall, aside from the usual cough and cold remedies, there’s not a lot I can do. I try to remind myself any time we can stay out of hospital with an illness is a good thing. But still there’s the anxiety that comes along with having all these plans turned upside down. I had requested time off. Eva’s grandparents on both sides had requested time off. Between us we were going to ensure Eva had someone with her at all times. It wasn’t a mammoth task to organise, but not a flick of a switch either. It all takes energy and forward planning.

If this surgery is bumped, then it affects all her other operations as well. Her cochlear implants might be pushed out. Who knows when her mickey button will be put in. I’m impatient. I just want it all done so we can move forward. So Eva can start the process of healing and move on.

And then I think of the winter, and how horrible last winter was for her health, and I worry if we don’t get things done soon we might not get another chance until October when the weather comes back to Spring again. But again, there’s nothing I can do. If she doesn’t get operated on next week, I’ll just change my leave and go to work. I’ll take the leave another day. It will happen.

In the mean time, Eva is still smiling and out of hospital. I have to keep telling myself that.

Another thing that can make me smile: this lovely photo showing off Eva’s favourite thing to do at the moment, standing up (with a lot of support).

standinf

top_mommy_blogs_signature_banner (1)

Triumph

I’m part of an amazing group of women online. We are the spin off to a larger online group that in turn is the spin off to an amazing parenting podcast, The Longest Shortest Time. This group of spectacular women have supported each other, and me, through some crazy ups and downs over the last year. I have turned to them at all hours of the night and day when I needed them, and they have never failed to be there with a comforting word, the occasional – much needed – expletive, and compassion and understanding. They have also allowed me to stretch my writing muscles as part of a writing group. Five days a week we get a prompt from one person in the group and use that prompt to write for 10 minutes about anything. I’ve found it liberating and exciting to see where my brain goes in those 10 minutes. I admit I can’t always fit it in, but more often than not I do, and it has been great. We pair up and send our writing to each other. A lot of my writing revolves around Eva and my life this past year, but not all of it. This piece, inspired by the prompt “Triumph”, is indeed about my little Peanut and I wanted to share it here too. 

Thanks ladies of the Longest Shortest Time Refugees for bringing so much to my life!!

Triumph

My definitions have changed. Words that meant one thing to me just a year ago have been flipped on their head.

Disaster is now something reserved for true catastrophe. Rather than rain while the washing is out. Happiness is not a special occasion word but for the everyday. Triumph is the lift of a head or a roll, rather than a gold medal or first in class.
My definitions have changed because you changed them. I’m still me, but the world feels different. I’m seeing things I didn’t see before and appreciating them all the more because I know they are new to me.
But you’ve always seen it this way. You can smile at the smallest thing. A tickle. A soft touch. It doesn’t take much to please you. And it amazes me that I used to think that made you and peoeple like you less valuable somehow. As if paying taxes and coming first in English were what really mattered when a life was over.
I’ve always been an overachiever. I’ve always thought there wasn’t much point in trying something unless I knew I could be good. The best, even. But you’re showing me the other side. Giving me a new definition for living. A new definition for life.
You’re showing me that I can enjoy something without being the expert. I can make mistakes. Fall flat. Falter and fail. And that’s ok. As long as it makes me smile. As long as it makes you smile.
I’m still struggling with this tendency to try for perfection, or at least top percentiles in everything. I know I’m doing it with motherhood too. Am I doing it as well as the other mums? Am I doing enough? How am I measuring up? But behind those concerns I already know I’ve fucked it up fairly severely in areas that many mums wouldn’t dream of, and there’s something liberating in that. I can only improve from there.
Every time I see you smile I know I can’t be doing it all wrong. And like you, I’m trying to appreciate that it doesn’t have to be all right either.
IMG_0950

Blood letting, babies and a good result

This morning was… busy. Eva had a follow up test after her cortisol levels were shown to be slightly lower than normal at a blood test last week. People with CHARGE Syndrome often have issues with hormones due to the involvement of their pituitary gland. it can affect growth, stress, and other areas of development. It was something specialists were on the look out for with Eva when she was first born, but they ruled it out at that point as her blood sugar was stable and this indicated her pituitary gland was functioning.

But with surgeries coming up her paediatrician wanted to ensure she was producing the stress hormone cortisol in order to get through surgery ok. After her baseline cortisol level looked a bit low another test was ordered where she would be injected with a drug that theoretically should force the body to up its cortisol levels. If Eva’s body failed to do that after the drug was introduced they would know they needed to give her steroids to help her through surgery.

What they didn’t tell me before this test was how long it would take.Tuesday mornings are good for appointments for us because I don’t teach until after morning interval so I have a window of a couple of hours where we could book things if necessary. I thought I was being clever with this test and that by showing up at the hospital at 8am we could be out before 9am and at school by 9.30am.

When we arrived at the hospital I started to realise my mistake. The nurse was talking about numbing cream which takes 45 minutes to work before they could even attempt to put a line in to administer the drug and take blood samples from her. Once the drug was given, Eva would have two blood samples taken. One at 30 mins after, and one at 60 minutes after. Iime was adding up the times in my head, with some buffer for realism, and it was getting very close to the time I needed to be back and teaching by.

It would be tight, but I was pretty sure we would make it. I texted our day care provider and let her know we were going to arrive between 10am and 11am. She called me back quickly, saying she had an appointment of her own at 10.30am so wouldn’t be home until 12pm.

It looked like today was going to be bring your baby to work day. For half an hour at least.

The school rallied and organised a reliever for one period for me, saving me from juggling Eva in front of my students.Thanks to the wonders of the modern phone I managed to sort all this out while snuggled up with Eva on a hospital bed in the Children’s ward assessment unit.

It almost goes without saying, but Eva did not enjoy the procedure. The nurse and paeds doc did a quick and gentle job, but it still involved putting numbing cream on multiple spots on Eva’s body with tape holding it on, then later ripping that tape off; putting a needle in Eva’s foot; and then every half hour, coming to shift that needle and squeeze her foot to take more blood. She cried and cried and showed off a set off lungs which, while still quiet compared to the average 10 month old, is getting more powerful (read: louder) each day.

In between blood letting sessions I fed Eva and then managed to get her down for a nap by lying down with her on the bed.

After we had been at the hospital for almost two hours they let us go. Eva came to school with me and entertained some of my colleagues with her rolling, bouncing and screeching until it was time to go to daycare.

Juggling tests, appointments, surgeries and daycare with a full time job is not easy. This term is going to be particularly precarious with Eva’s surgeries. So I was extremely grateful today to have a work environment where they understand the situation I’m in and what Eva’s needs are. It helped immensely to calm my own sense of panic to know even if this procedure went four hours overtime, I would be covered. The world wouldn’t end. It meant I could focus on her and keeping her calm, rather than being world’s away in a haze of anxiety about what to do about my classes.

When Eva was happily in daycare and I had got back into the swing of the day, I got an email from Eva’s paediatrician saying that while her baseline cortisol levels are low, they rose to appropriately during the test today and she is fine to go into surgery. I’m very happy we don’t have a new thing to add to the list. It would have been fairly demoralising to add an Endocrinologist to our list of specialists when I’m trying to cull rather than add to our never ending rounds of doctors.

So it was a hectic morning. Tears. Panicky emails. Hours spent at the hospital. But a good result and we are one step closer to Eva’s surgery in two weeks.

Here’s Eva getting a nap in, and me getting in some cuddles, in between blood samples.

image11006370_10153118878090799_1085089886074086215_n

top_mommy_blogs_signature_banner (1)

What brings you here?

When I log in to Wordpress each day to check out my stats and see how my numbers look I always have a casual look at the search terms that brought people to my blog. While many people post about funny terms that are completely unrelated to their blog’s content, usually the search terms for my blog make me want to reach out across the internet to whoever is looking it up and hug them.

In the last month, in amongst the people who looked up “The One in a Million Baby” and came straight to me, were these…

morning sickness and chromosomal abnormalities

how many babies in a million have blue baby syndrome

nuchal measurement range

charge syndrome newborn baby

what is the chance of a child surviving with anophthalmia

Each of them takes me back to a point in my pregnancy or since Eva’s birth where all I could rely on was uncertainty. I’m sure I put in the exact phrase “nuchal measurement range” after that first scan where I found out my baby’s nuchal measurement was 3.51mm. Outside the normal range.

While I haven’t googled all of these, the uncertainty and fear present in each of them is what I can connect with. I feel horrendous for that stranger somewhere in the world hunched over their computer with a hand to their mouth, wishing they had not just pressed ENTER on their keyboard. Wishing they could be the mother who gets to go home from the scan with a DVD and a total lack of worries. I hope some of them get some comfort if they do land on my blog.

Then there was this one.

realising things arnt the way u imagend

This one had me staring at my screen in solidarity for whoever that writer was. They had just figured out a rough lesson. One I know too well.

I’m glad that people are finding my blog. People who want to find it, and people who might need to find something out there. But it also sort of breaks my heart that so much sadness leads people to my writing, so I was relieved to find this one too.

my heart finding you my love

I’m very happy that in the last year I have created something which could potentially help someone in that desperate moment of google searching, but also very happy that they could stumble on The One in a Million Baby with something like that. My heart finding you, my love. My heart found Eva. I’m happy that feeling is reflected in my writing enough that it’s searchable.

top_mommy_blogs_signature_banner (1)