Summertime and the living is… pretty great actually

Today felt like the start of summer. The mercury hit 28 degrees celsius in some areas of the city. It was weather which forced me to let my very pale legs brave the sun, and weather which insisted on sunscreen and a hat.

The Peanut spent most of the day at day care, one of her last days for the year, but this evening we went on a picnic with a few friends and their babies. We went to a local reserve and found a spot in some dappled shade. It was after 5pm but still warm in the shade. Amazing in Wellington.

I drank a beer and ate some good food while the Peanut rolled on her blanket, legs free from tights, enjoying the fresh air.

We were attacked repeatedly by a swarm of ducks and almost mature ducklings, a little too familiar with what a picnic entailed. We took turns chasing the ducks away, squealing as they got more and more uninhibited and took to eating food out of our unexpecting fingers.

Almost adult ducklings getting a little too familiar with our plates.

Almost adult ducklings getting a little too familiar with our plates.

The Peanut fell asleep on my chest and while the others went for a walk I lay back and looked up through the canopy of pohutakawa trees at the blue sky.

I saw birds circling above the treeline and clouds slowly drifting in my periphery. The red of the pohutakawa lit up in the late day sun.

I watched Boyhood for the second time last night and at the end of the film the main character sits with a new friend having ingested some special brownies a suitable time before and they talk about life. The girl says that she thinks the saying “seize the moment” has it wrong and that in fact the moments seize us. The main character agrees excitedly, saying it’s relentless, these moments. It was stoner talk. The kind of thing that seems profound to everyone except the people who aren’t stoned. But while I was lying looking up at the sky I realised they were onto something.

Before Eva, I was going through life always looking forward to the next thing. I had my eyes on what came next so much it felt like I wasn’t always enjoying the now. The moment I was in. Eva has forced me to reconsider what’s important and to rethink the pace of my life. I was never a fast paced jet setter, but I didn’t take the time to enjoy moments or people in my life enough.

As I lay on the blanket, with Eva asleep on my chest, her dummy pulsing rhythmically against my neck, I thought about all the other times I have looked at the sky in the summer, relaxed but with part of my brain always whirring. I guess this thought process means my brain was still whirring today, but I just felt happy to just lie there. Happy to experience a summer night with my little girl where not much happens but the moments feel so special nonetheless.

I know these revelations are cliched and trite, something you might read on a magnet on your fridge, but I’m so glad Eva has been able to give them to me and that they feel real and true, not something spouted by well wishers. I would hate to have to wait until a cancer scare or losing a loved one made me realise life is about living.

Lying back with the leaves casting shadows over me, and my daughter with me, I just felt excited. Excited about whatever comes next, but also excited to enjoy today. I don’t think I’ve ever felt so happy to just be here and be alive and it’s pretty damn enjoyable!

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On the move

The Peanut is on the move. She can now roll onto her tummy and keep going back onto her back again. It’s really in one direction only at the moment (she will be an ambi turner, yet!) but it’s still pretty cool.

I can look away for a few moments and look back and she has made her way across a metre or so of carpet. Every roll brings her into tummy time and to roll out of it she has to use her arms to push her onto her back. Working on those guns, one roll at a time.

(Sorry this video is kind of long. I forgive you if you give up after that first complete roll. Hang in till the end if you want to see her smiles.)

The variety contained within the common

Yesterday I reblogged a post by Star in her eye about Strange Luck. The piece talked about the luck the writer felt at the issues her daughter didn’t have, in comparison to other children with the same syndrome. Issues most parents don’t ever have to feel lucky about, or don’t ever think to feel lucky about.

The piece resonated hugely with me. The Peanut has CHARGE Syndrome and when we were first told this, my family and I did a lot of research about it. It seemed like the Peanut had it worse than most. Unlike many CHARGErs I could find, who are either deaf or blind with some of the other sense affected, the Peanut was both profoundly deaf and blind. She had brain issues that other CHARGErs didn’t necessarily have which made me think her sensory issues would be compounded in terms of the affect on her development.

Since that initial diagnosis I have joined up with CHARGE groups online and have realised I have a lot to feel lucky for. While it still seems there aren’t too many CHARGErs as profoundly deaf and blind as my girl, she is all in all quite healthy. I get to feel lucky her core strength is building. I can feel lucky that she wasn’t born with choanal atresia which is the blocking of the nostrils, sometimes on both sides, which makes breathing, well impossible. I can feel lucky she can cough and swallow and sigh, which means her airways and breathing muscles are working mostly as they should. This also means she can clear secretions and doesn’t need to have at-home, hospital grade suction. I can feel lucky she wasn’t trached as a baby and can breath by herself. I can feel lucky she likes to bring her hands to her face and put things in her mouth, which is a promising sign for learning to eat a bit later in life. These are not things I ever thought I would feel lucky for, and when I reflect there is a certain pain in that luck. As Star in her eye pointed out, it’s a strange luck.

Other families can feel lucky their child has part of either hearing or sight to help them communicate. Or they can feel lucky because, unlike the Peanut, they have two eyes and no cyst. Or they can feel lucky because their CHARGEr is verbal and communicative. Each parent and family will have their own list of strange pieces of luck they will hang on to.

I haven’t had too many opportunities to just feel like a normal mum since the Peanut was born. I still sometimes get taken aback when I realise that I am a mum. I am so involved in the day to day, the appointments and drop offs and scans and hospital stays, I forget that when all is said and done we are a mother and daughter.

So, in the same vein as the strange luck, I realised there is also the strange joy. I felt it twice this week already, and it’s only Wednesday. Two days ago I went to a mother’s group with some friends I haven’t seen in a long time. It was so nice. Most of them already knew about the Peanut and her needs so I didn’t have to explain her condition to anyone. No one asked about her eye or her feeding system. No one stared. The Peanut was just another baby at a playgroup and was introduced to the other babies as such.

At one stage we were having the inevitable milestones talk and I showed them how the Peanut could roll onto her stomach, hold her head up and then keep rolling around back onto her back. One mother said to me, “well, your days of being able to leave her alone on the floor are over”. The absolute normality of that statement floored me. I had been so preoccupied with the things she couldn’t do yet, that the fact I couldn’t leave her alone because she would make her way across the room almost made me laugh out loud. It was a strange joy to feel so happy at something some parents either take for granted or moan about. The Peanut is mobile!

The second moment of strange joy came when I picked the Peanut up from her in-home day care yesterday. He carer told me how far she had come in the two weeks since she last saw her and then told me she thought she could see two little bottom teeth about to poke through in the Peanut’s otherwise gummy mouth.

“How exciting!” I stammered, as if I had thought the Peanut might not get teeth.

She laughed and told me to expect a few sleepless nights as those teeth broke through.

Teething isn’t something parents get excited about. It’s something they dread. It brings grizzling, and temperatures and unhappy babies. But to me it felt like another milestone because it felt like something a normal mum and baby go through. Something we have in common with every other family.

There’s a lot that isolates mums and babies when special needs are involved. We have to throw away the milestone chart and make up our own; we have to explain our children’s syndromes or conditions, when others just say, “this is my daughter”; we feel people’s stares in public instead of strangers asking her name and how old she is. But there are becoming more and more moments where I feel like a normal mum with her daughter. Where our relationship doesn’t have to have the word “special” in front of it.

An internet friend who has been very kind to me, and has an exceptional talent with words, sent me a card a while back with a present for the Peanut. In the card she said,

“Those of us priviledged enough to follow your story do so in awe and admiration. But my hope is that we don’t create distance between us as mothers by saying things like ‘we can’t imagine’. Because of course we can. It’s imagining how you feel that builds empathy. It is not your job, or Eva’s to teach the world anything. That’s not what CHARGE is all about. Eva is whole and loved. She is human, not angel. She is your daughter and you are both full participants in this hard and beautiful life of parenting. But your story matters because it’s part of this life. To hold it close is to acknowledge the variety contained within the common. I hope you always feel visible in our community. You are a mother.”

I cried when I read this. She knew our story, but couldn’t know that I had been feeling, even subconsciously, that I wasn’t a full part of either our online mothers’ community, or the community of parents in general. That I felt a distance. That I felt like an other. I didn’t feel like part of that whole. Her words were exactly what I needed to hear, without knowing I needed them in the first place.

It’s nice, once in a while, to be reminded, either by the kind words of a friend, or the beginnings of two new teeth, that I am a mother. The Peanut is my daughter.

The strange joy does occur once in a while to tell me this and let me know our story does not illustrate the differences, but instead demonstrates the variety contained within the common.

It's a bit blurry, but the love is pretty clear.

It’s a bit blurry, but the love is pretty clear.

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Strange Luck

Oneinamillion:

I know this feeling of counting your pieces of luck, which to anyone else don’t seem lucky at all, so well. She said it better than I did, so I wanted to share.

Originally posted on Star In Her Eye:

We live in a land of strange luck.

We are lucky our daughter’s seizures have (thus far) stopped within a handful of minutes, rather than going on for hours.

We are lucky our daughter’s atrial septal defect—colloquially known as “a hole in her heart”—has closed on its own.

We are lucky her anomalous vertebrae curve 30-some degrees one way and then, in some fascinating act of perfection-via-imperfection, curve nearly the exact same number of degrees in the opposite direction, thus making her spine (so far) fairly straight.

We are lucky our daughter’s eyes can see.

Lucky her ears can hear.

Lucky she lets food into her mouth. And we are practically lottery-winners that she has learned to chew. None of these are givens for a kid with Wolf-Hirschhorn syndrome.

The luck extended back to the beginning, when I gave birth, although we didn’t know luck’s fat, grinning face like some…

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Sitting up – whoever knew it could be so exciting?

First there was the smile. Then the giggle. Next up came rolling onto her side. Then the head lifting in tummy time. Then the rolling onto her tummy and back onto her back (with a lot of effort).

Our next big goals are pushing up through her arms and weight bearing on them in tummy time, and what I see as the golden chalice of milestones, sitting unassisted.

Sitting may seem like such a small thing, but to the Peanut it is HUGE! It means she gets to interact with the world in a whole new way. She can take her feeds sitting up, reducing her reflux. She can play explore without always being on her back. And for me, it means she will be strong enough that I don’t need to be quite so careful while holding her. Up until very recently carrying her was like carrying a 7kg newborn. She was floppy and would thrash backward off your chest so if you didn’t have a hand ready she almost backflipped out of your arms.

Now, you can almost put her on your hip and carry her that way. Almost.

So I started experimenting with the high chair. First I put her in it with my hand on her chest and another hand hovering to catch her head if she started to slip.

Our first attempt.

Our first attempt.

And then today I put her in and sat nice and close and watched her (while filming of course).

I know watching two minutes of a baby sitting succesfully in a high chair is hardly the biggest thing in the world, but I’m sure you can hear in my voice that it’s pretty damn exciting in this house!

I apologise about the length of the clip, I was just so impressed she was still going strong!

 

Wordless Wednesday

When a community loses a member

Since the Peanut was given the working diagnosis of CHARGE Syndrome something fairly special has happened. Through the internet, being the magical tool that it is, I have been able to connect with a global CHARGE community. These parents and CHARGErs are supportive, honest, open and helpful. They acknowledge that things can be hard and let you have a vent, but they also are full of positivity and love.

They ooh and aah over every new CHARGEr baby as they join the community, and they celebrate every milestone, no matter how big or small. The CHARGE community describes itself as a family, and since I have been part of it, I have definitely felt welcome. One particularly enthusiastic member, and I don’t think she would mind me mentioning her name here, Ellen, took me on as a friend and made me feel right at home.

I have seen new members join on an almost weekly basis since I joined myself. They introduce themselves and their little CHARGEr to the group, usually with some trepidation; their lives have just been turned upside down. They don’t know if they even want to be part of this community. I know the feeling well. I’m always impressed when parents of weeks old babies join up. It took me months to reach out.

While we celebrate each other’s successes, another thing that I have realised is we grieve each other’s losses. And since I have been a part of this community there have been a number of losses of much loved, happy CHARGErs whose journey ended too soon. I have seen and been part of an outpouring of grief for families who are having to readjust their lives without their precious kiddo.

Living with a special needs child isn’t easy. Losing one, I can imagine, must feel impossible. The latest loss felt particularly close to home. Moriah was an adorable little six year old girl and in the days leading to her death her family posted updates and pictures of their happy girl in hospital through their community facebook page, Moments with Moriah. Just days before she died there are photos of her smiling and laughing, happy despite a hospital stay. She looks like a six year old version of my Peanut and my heart just broke for that family.

For all the times I have thought about how challenging my life might be with a child with special needs, the thought of losing the Peanut so quickly and unexpectedly breaks my heart. The night I drove down to the hospital, not knowing what to expect, when the Peanut was taken to ED with breathing issues, I thought it might be our time. It wasn’t, but I remember that heart in the throat feeling with a ferocity that scares me. Every day that I spend with this little girl makes me love her more and feel more like the mum I know I can be.

I think about the life I almost chose and I feel thankful that I went with my gut and followed through on being the Peanut’s mother. It’s a decision I will never regret.

It’s not something I considered as part of the package of being a special needs parent. Not only do you have to give more than you thought was possible and be more than you were before, but one day you might have to say goodbye to the child you gave everything for, too early.

The Peanut does new and exciting things almost on a daily basis. I find myself day dreaming about who she will be and what she will achieve. I feel heartbroken for Moriah’s family who are now faced with the fact they won’t find out who their little girl will end up being. If you are praying person, send a prayer their way. If you’re not, like me, send some healing thoughts out into the ether. This family, and too many others, need them right now.

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One year later

It has been almost a year since The One in a Million Baby was born – the blog that is, not the Peanut.

I started this blog while I was pregnant with the Peanut. I had overcome what I thought was the scariest hurdle I would encounter. I had been reassured that my baby’s brain and heart issues were fine after all, and it was just the Peanut’s left eye (her right, they said, was perfectly formed) that would be a problem at her birth.

I was elated and excited. I thought my blog would chronicle our lives. Mostly normal lives.

It’s been a rocky year, to say the least. I’ve taken breaks, and wondered if blogging was still for me. I started the blog on an upswing after good news which meant I could reflect on sad times, rather than live them out in type. But as my journey progressed and the Peanut became a real little human, I was forced to decide whether to continue to share our story or not. Writing about something sad that is over and in the past is one thing, writing about the sad thing as it happens, is quite another. So I took a break. I wanted to know where I was going before I committed our story to the written word.

I started out this adventure with a goal of one blog post per week. Well with four weeks left until I hit the one year mark, I am happy to report I have published 75 posts (including this one), well above my target of 52. I have learnt a few things about the regular writing and blogging process.

1. Practice might not make perfect, but it certainly improves your writing!  (Hear that, students?!) I spent days on my first post, altering and tweaking. Now a post might take me an hour or two. If it’s one I’m nervous about I’ll sit on it for a night and re read it in the morning. But the words certainly come faster now. And I put that down to sheer volume.

2. The internet isn’t all bad. Sure there are a few trolls, and people who will happily tear you down, but I have also met some of the kindest, warmest, and friendliest (if you can call it that over the internet) people who have shared in my experiences and sent love from all around the globe. I consider the people I have “met” through my blog to be real friends and would love the chance to road trip around the states and the UK and wherever else they hail from to meet a few. I have been so touched by all the comments from real life friends, internet friends, blogging friends alike.

3. Writing is something I have always loved and should never have stopped doing. As a kid I would write short stories and enter them in competitions. A particular tale about my guinea pig Charlotte who went missing one day and turned up in the hay bag in the shed earned me 2nd prize in a national writing comp when I was 7. I often sourced my ideas from my Dad who was a never ending stream of good nuggets of plot, but the writing process was all my own. I liked it so much I sought a career in it, and while journalism and it’s dark side, public relations, didn’t suit my personality, I still liked the writing. And then I stopped. I felt uninspired and like I had nothing to say. I’m so happy to have got my voice back.

4. I want to have readers. I started the blog as a way to process my feelings. It took a while before I even shared it with my friends and family. I was reluctant to have too many readers and was scared of what people might think and say to me. But now, I want readers to find me. Particularly parents of other special kids who want to connect. I have found it so helpful to read other blogs written by parents of special kids. Parents who are so different to me in many ways, but have this important thing in common. I want to be able to provide even an ounce of the support I felt when I read these blogs.

5. The Peanut is amazing and I love her to bits. This one sounds like a strange one to learn through the process of writing and blogging, and really I know I would have this one down without the blog. But I do feel like the blog maybe helped me figure this out sooner. The writing process itself has been fairly instrumental for me as a way to get my thoughts out of my head and make them real, a sort of navel gazing therapy. But also the people I have met and read about have given me an insight I think I would have taken longer to find without. Sometimes it was just through reading other people’s experiences that were similar to my own, and sometimes it was when I reached out to other bloggers for help and they stepped up and gave me just what I needed. That wasn’t always a pat on the back, sometimes it was words that were hard to hear but it was what I needed at the time and I was so grateful to read them. Lydia Unicorn and Skubala, I hope you both know how important your friendships have been to me and to the Peanut. You both took time out from your own challenges to offer me (a complete stranger) words of comfort, advice, opinion and solace. Thank you!

6. Special needs parenting isn’t so different from regular parenting. Through reading other parenting blogs and writing this one, I have realised that many of the feelings I have and worries that occupy my head are the same as any other parent. The parameters might be a bit different, and the examples might differ, but the worries stem from the same place. I worry about milestones, just like every other parent. I think about making mum friends, just like every other mum. I feel anxiety about leaving the Peanut in day care, just like most parents. I worry about whether the Peanut will have friends and feel loved, just like all parents. It’s been a relief and made me feel like I’m not so different or isolated.

This has been a year I will never forget, for the good and the bad, but if I do start to feel hazy about some of the timing or details I can come back here and check. I have made friends with some of the most amazing people I have ever come across and read some of the most moving, funny, insightful writing. I always wanted to make writing a habit, but never had the drive to spend that time at the keyboard, and I never had a concept that gave me regular inspiration to write. Never in my wildest dreams did I think I would be writing a special needs parenting blog, but this year has taught me life is full of surprises. Some bad, but many good.

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Christchurch, cochlear implants and some giggles

We are back from our excursion to Christchurch. The news is good. They are recommending bilateral (both sides) cochlear implants. Provided the surgery isn’t too lengthy they will be doing both of the implants in late March next year, before the Peanut turns one.

They were very careful to point out that the results of the implants are unknown and vary widely, particularly in babies like the Peanut who have CHARGE syndrome or other issues as well. I knew this already and as I have said before, I am trying to contain my hope and excitement to appropriate levels. They also said, however, that if they didn’t think there was going to be at least as much benefit as hearing aids, they wouldn’t be doing it.

There are a lot of different results that could come from the implants from no improvement through to environmental sound through to the ultimate, hearing and understanding speech. Obviously this last one is the big one, but I am excited about the prospect of any improved hearing for my little girl.

So she is on her way to potential hearing.

The day was fairly exhausting with long appointments, hearing tests which she hated, and traipsing back and forth across Christchurch to see doctors and specialists, but the Peanut still managed to pull out some winner smiles and even this giggle session. We missed the best giggles and the ones we captured are beginning to sound a bit like the laugh/cry of a tired baby, but you get the idea.

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Remaining hopeful – cochlear implant assessment

Tomorrow, the Peanut, me and my Mum will fly down to Christchurch, and on Friday we will meet the Southern Cochlear Implant Programme team and have her cochlear assessment.

I am equal parts excited, nervous and apprehensive. I know better than to get my hopes up too high that this will be a magic bullet to get the Peanut hearing, but I know that this rational voice is just the facade that is hiding the very very hopeful me behind it.

We got the results of her MRI which was looking at the physiology of her ear drums, cochlear and hearing nerve yesterday and were told that yes, she does have hearing nerves. This is very good news. Without intact hearing nerves, cochlear implants are useless. She does have unusual cochleas and inner ears on both sides, which aligns with CHARGE Syndrome and doesn’t prevent cochlear implants from working but may mean the implantation of them is more complicated than with a baby with normal ear anatomy.

I am sure we will learn more about this in Christchurch. At this point though, it is just fantastic that what they could see on the MRI hasn’t made them say no to the implants and our trip to Christchurch is still going ahead.

Even if they implant them successfully, there are no guarantees in terms of what the implants will do for the Peanut. They may do nothing. They may help with background and environmental sound, or they may help her hear and understand speech. I am trying to keep my expectations low, but I can feel the bubble of excitement growing in my chest.

I know what it feels like when that hope gets crushed. I had it with her eye surgery which never amounted to anything. While I know I should be tempering my own excitement, part of me just thinks I should enjoy it. Even if it does amount to nothing and the Peanut remains profoundly deaf, I can enjoy this moment of hope and expectation. I am constantly amazed at the human capacity to remain hopeful despite the evidence stacked against you or the events of the past. While being disappointed is crushing, I would rather have that disappointment than never feel hopeful.

Wish us luck!

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