The tug of expectations

Today is a good day. A great day, even.

Today we had the Peanut’s Visiting Neuro Developmental Therapist (VNDT) over to see us. She has been over the last two weeks but the Peanut has chosen that exact day and time to nap the morning away. She is normally a very speedy napper, but for the last two weeks has slept for more than two hours during our VNDT’s visit.

But today she was awake, fed and ready to show off her skills. I had tried to tell the VNDT last week that the Peanut has been rolling onto her side on both sides. She heard me but I don’t think she believed me. Maybe some parents see a smile, and presuppose a clever thought. See a twitch and call it a roll.

I so wanted to be able to show her how far the Peanut has come since we got out of hospital. I needed someone else to see it and validate her progress.

Her VNDT didn’t hide her enthusiasm when the Peanut rolled onto either side using her head as a guide, rather than letting her head turn last. She put her into the tummy position and the Peanut obliged and lifted her head up, not far, but more than she has in the past.

I got the Peanut to lie on my chest face down as I leaned back on the coach, and like she has been doing all week, the Peanut lifted her head and looked at me. There was none of the head to shoulder thumping she used to do, none of the rearing back uncontrollably and having to be caught by me. She was lifting her head, very intentionally and with control. When she got tired she started to tilt to one side, but for an extended period of time, she was holding her head up. Her VNDT was thrilled and confirmed what I had been thinking all week. The Peanut is making really great progress.

The Peanut practicing her head control. Two weeks ago she couldn't do this. Even a week ago, she would thunk her head repeatedly on my shoulder instead of holding it still.

The Peanut practicing her head control. Two weeks ago she couldn’t do this. Even a week ago, she would thunk her head repeatedly on my shoulder instead of holding it still.

Then her VNDT put the Peanut on her back and then on her side and put some wind chimes in front of the Peanut’s hands. Tentatively, the Peanut reached out and grabbed at the cold metal, clinking them together to create music. I’m not so naive to think the Peanut knew she was making music, or that she understood what she was doing, but just seeing her reaching, batting and playing was amazing. Seeing her trying to interact with the world around her made me light up inside.

wind chimes

I felt a smile creep across my face and just felt this warm wave of pride coarse through me. I am so proud of this little girl. She has spent a month in hospital, but since she got out she has made so much progress. She gets poked and prodded, injected and scanned, and yet she still likes to be touched, still enjoys contact and play.

I couldn’t have felt any happier in that moment than if she had sat up and crawled across the room. I silently thanked myself for making the decision to take her back and knew again that there was never any other way for us to have gone forward. It doesn’t matter if she learns to talk, or walk, or even crawl. This little Peanut is trying her hardest. And I will be there when each and every milestone is accomplished. No matter how many or few there are.

I was talking to a friend, Maggie, at her blog Yo Soy La Lay. Maggie had written a post on Unintentional Ableism where she mused on her daughter Tessa’s potential and abilities and the difficulty of having to drop certain expectations but also wanting the absolute best within the realm of possibilities open to her daughter. Tessa has down syndrome, and is about one of the cutest little critters I have ever laid eyes on. Her mother Maggie, is fantastic at accepting Tessa for who she is and who she will become, and wonders about where her daughter’s future lies. Like her, I feel this tug between having no expectations and having low expectations caused by not knowing where your child will end up. What your expectations should be.

I feel this acutely. Since I have accepted that the Peanut is not going to live the same kind of life as me I have felt so much freer and happier. I have dropped and let go of a lot of my expectations of what I thought she would be like, or what she would be able to do. But that’s not to say I have low expectations. I expect her to try hard and do her best and be the best she can be, whatever that is. And I expect that I will be there by her side helping her try.

Accepting she may not go to university, or may not even learn to walk, doesn’t mean I’m putting any less value on the things she can learn to do. Watching her interact with the wind chimes and seeing her reach out to take part in the world around her just reinforced that for me. I will celebrate and enjoy everything that the Peanut is. And let her decide what is expected.

When are you an adult?

When do you feel like an adult?

I’ve always considered myself a late bloomer. My first kiss was at 16, where lots of my friends crossed that threshold at 12. I’ve been undecided on my adulthood and leap frogged around careers and gone from writer to public relations to teaching in the space of 10 years.

Having a baby should really be a pretty good signal that you’ve reached adulthood, but somehow, sometimes I still don’t feel like it.

Taking out life insurance. That was the moment. Sitting at dinner with my sister and her partner (who works in a bank and knows the insurance game in and out) and my house mates, who have their own 10 month old to think about, the topic of life insurance came up. We all realised none of us had it, and I could tell we were all going through the same mental calculations.

Who would take our babies if something happened to us? How would they be supported? What happens if I get sick?

Now, two days later, I am waiting for a quote to get the ball rolling. And there’s no denying it. When you take out life insurance, you are an adult.

Then again, I followed that activity up with a bit of dancing round the lounge, Peanut in tow, to Taylor Swift’s “Shake it off”. So who knows.

Ignoring the whirring of the blades

I remember hearing about parents who didn’t have a break from their baby until they were many months old. They didn’t trust a baby sitter, or their baby was a bad sleeper, or they were exclusively breast fed, or the parents just weren’t ready. I thought to myself, bugger that.

I told myself when I had a baby I would make time for myself. I would get a good babysitter and be happy leaving my baby with other people. I didn’t imagine that when I left for a night out it would feel like a struggle. That even when your baby is away from you they are occupying a part of your brain.

My Peanut is not a typical baby. To take care of her, even for an afternoon, you need to be taught how to feed her which means learning to use her feeding pump, and learning how to aspirate her NG tube to ensure it’s in the right place. You need to learn a list of touch cues like what to do before picking her up, and how to introduce yourself to her. You need to give her medicine multiple times a day through her NG tube and once or twice a day clean out her left eye and put ointment on it. These tasks are not difficult, but they do need to be taught.

Like every baby, the Peanut also has a list of requirements that apply just to her. How to hold her when she’s upset. What stroke makes her smile, and which one makes her giggle. The technique to stop her startling when you put her in the bath. The best way to get her to sleep. I have learnt these things over time with her and I am getting to know her cues well. I realise now it’s these things the parents are thinking of when they are reluctant to leave their baby with someone else. Will they be able to figure out how to get her to nap during the day? Will they be able to tell that her squawk that looks like talking is actually a big sign she’s getting tired?

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We’re getting pretty tight, the Peanut and me.

I think breaks from parenting are so important. For any parent. But for me, they feel like an absolute must. So while dropping the Peanut off today with one of the many people who love her I felt a twang, but I tried to ignore it. That elastic band between us has gotten thicker since she has been back with me. Our month together, in and out of hospital has made that band stronger, less brittle. So when it stretches I feel it in my chest. It aches.

Before she was back with me I was more accustomed to saying goodbye to her. I got used to it in her first six weeks which she spent in the hospital where I had to leave each night. We hardly knew each other, so I wasn’t the expert on her, the nurses were. Then she was with me, but I knew it might not be for long, so while I got to know some of her cues I also knew that knowledge was new to me and would be learnt by her foster mother quickly. Then the visits while she was in foster care. They were hard. So hard. Harder in fact because I knew at that point there was someone else who knew the Peanut better than I did. Instead of giving advice, I had to smile and nod as I was told how to soothe my daughter. This time she’s my little girl and I am definitely the one who knows her best. This time I know she knows who I am. She can tell when it’s me holding her, and for the first time I’m worried about whether she realises I’m not there and if she feels bad about that.

I have spent my day off taking two luxurious naps and eating. That’s it. Tonight I will watch a movie and know that when I go to bed after 10pm I am going to sleep without being woken by my alarm telling me to feed the Peanut, or by the Peanut herself, crying.  I will feel better for this sleep. When the Peanut comes back tomorrow evening I will be refreshed. I won’t have done anything exciting, but I will feel brighter and fresher. I will have thought about the Peanut off and on every hour I have been awake. Worried occasionally, but trusting that if there were any issues I would be contacted.

In order to be her mum and do a good job, I need for other people to know the Peanut as well as me and feel confident taking care of her. I need to know when I drop her off that she is getting the same level of care as me. But to do that, I need to give up control and give people the chance to know her as well as I do. She requires a level of care above and beyond most babies, but it’s not impossible to learn. It just takes time.

I can’t be the only one who can take care of her. This is going to be a long and bumpy road, and I need to have other people on it with me.

So I will put up with the stretched taut band around my chest, knowing that both the Peanut and I will benefit from there being multiple people who can care for her confidently. She is a lucky girl in that she has many people who love her and want to care for her. She has extended family on both sides lining up to look after her.

I’m ignoring the helicopter mum tendencies which are hard to resist with a special kid, talking and going about my day as if I can’t hear the whirring of the blades all the time, and promising myself that the next weekend I get off I’ll make more of a plan. I’ll organise more than just naps to take my mind off the absence and enjoy my time off. I’ll see my friends and drink a beer, maybe go shopping (window shopping that is) knowing that the Peanut is well taken care of, and thanks to her family, so am I.

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One thing at a time

Twelve days and counting! We’ve been hospital free for 12 days, with the Peanut’s health getting better each day.

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The Peanut enjoying a new toy and showing of her ability to put things in her mouth.

For the first couple of days she still seemed unsettled and cried in the breathless way that makes me panicky to calm her down. In my head an imaginary oxygen saturation machine is guessing at numbers as she gasps and I try to jiggle her into serenity.

But for a whole week now she has been back to her normal self. She is smiling, and talking and rolling on her side. She is crying only occasionally and when she does it’s her normal cry, not a breathy, gaspy cry that is alarming to everyone.

I have finally got back to my own room without having to worry about every squeak and murmur through the monitor.

She is still insistent on waking pretty early, but I am working on training her out of that. And she is still a big fan of pulling her NG tube out. Since that first go I have done it half a dozen more times and each time I get quicker and less hesitant.

The days are getting warmer, and I can only hope that as the weather improves, the Peanut will be less likely to catch another bug. Bring on a long hot summer (I laugh a little as I write this, being in the windy capital of New Zealand).

It is going to be a busy few months. Next week the Peanut will go under general anaesthetic for an MRI and CT Scan. They want to look closely at her ears, specifically her hearing nerves, to see if cochlear implants have a chance of working. They will also use the opportunity to have another look at her eyes and maybe finally settle the question of whether it’s hemangioma vs cyst in her left eye.

In the next few weeks she’s due to have a PH study done which will look at when and how much she is refluxing. The doctors putting in her mickey button (which will replace her NG tube) will want to do this before she has her operation to know if they should be tightening the top of her stomach to help the reflux at the same time.

Then in late November we have her cochlear assessment in Christchurch.

Thankfully the orthopaedic surgeon has said that although her left hip does seem to be dislocated, they won’t do anything about it until she is one. So at least that’s one less thing to worry about before Christmas.

I am due to go back to work in the new year, and while it’s stressful for the Peanut and me to have so much on now, I think it will be good to get some of the major things out of the way before I am back at work.

I try avoid listing off the specialists she is seeing and the surgeries she will have in one go, because it seems overwhelming, but let’s give it a go.

  • Opthalmology
  • Cardiology
  • Audiology
  • Two different ENT doctors – ears and nose
  • Paediatrician
  • Home care nurse
  • Speech language therapist
  • Physio
  • Advisor for deaf children
  • Neurology
  • Orthopaedics
  • Gastroenterology
  • Genetics

 

  • Heart surgery (before she is 4 or 5)
  • Hip surgery (around 1 year)
  • Surgery to put in the mickey button and tighten her stomach (before the end of the year)
  • Cochlear implant surgery (hopefully before February next year)
  • Eye surgery to sort out her left eye and fit a conformer

Thankfully I’m a highly organised person and have always kept a diary for appointments and meetings. So this level of scheduling, while in a new arena, isn’t totally foreign for me. As the months pass this list will get shorter, and I am excited about the prospect of getting rid of some of those doctors completely. But in the mean time if I just look at what comes next and figure that out first it is much more manageable.

The immediate goals, getting the Peanut’s face tape free and having clear images of her brain, ears and eyes for the doctors to get more conclusive ideas. That’s enough for now!

And in the mean time I am seriously enjoying having this little legume at home.

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She comes from a long line of pirates

The Peanut has doctors confused on a number of levels. A key disagreement is between Plastics and Opthalmology over her left eye.

The Plastics doctors think it’s a hemangioma (a kind of birth mark) and the Opthalmologists think it’s a cyst. Both doctors know what the other thinks, but neither are prepared to concede and admit defeat.

Each condition requires a different form of treatment, but as the Peanut will have no vision out of her left eye either way, there is no rush to attempt to solve the issue. The hope is that eventually she will have a prosthetic eye there, but before that can happen they will need to reduce the swelling in the area.

Since she was born the swelling has gotten bigger and then stabilised. It’s hard to assess if it’s bigger day to day.

When I look at the Peanut I don’t even see it anymore. I see her. Her smile. Her face animated in whatever mood takes her. But I know for strangers it’s the first thing they see. That and the NG tube taped down to her cheek. As mentioned in earlier posts, I have always been hyper aware of sideways glances and other people’s moods and dynamics. When we are out in public I can see people do a double take when they see the Peanut. I can feel them watching her, so I too watch her and refuse to look up and catch them out. Part of that is that I understand why they are looking at her and don’t want them to hastily look away when I catch them, as if there is something wrong with looking at her.

When little kids see the Peanut they will stop and take her in. I see a curious look cross their faces and they immediately ask, “what’s wrong with her eye?” I don’t mind explaining it to a child, although I am yet to figure out a concise and simple way to do so. Kids are curious, and you can see there is no bad feeling behind the question, they just want to know. Then there are the adults who ask. Lining up waiting for the bank to open the other day a woman looked over my shoulder at the Peanut.

“Oh dear, what’s wrong with her eye?” I looked up from where I was crouched next to her carryer.

“She has CHARGE Syndrome, that’s a birthmark,” I said thinking that might be enough.

“What’s CHARGE Syndrome? It looks like it hurts.”

My instinct is to tell them to Google it. But I don’t. I briefly say it’s a complex chromosomal disorder. When they look at me confused, which is the typical response, I refer to Downs Syndrome (even though they are very different), because that is something most people have heard of.

I don’t mind explaining the Peanut’s health issues and what CHARGE Syndrome is to people who know us. I will happily explain what the NG tube does and show how sensitive she is to touch. But I am getting tired already of having to explain her very complex medical history with absolute strangers. I probably should feel like it’s a chance to educate people, but I don’t. I don’t want every social outing we go on to be about educating the public. The Peanut is a baby girl, not a tool for social change.

Even some nurses have commented on her eye in a way that rubs me up the wrong way. One nurse when starting her shift just outright asked, “what’s wrong with her eye?” I should have said, “it’s in her notes. Read them.” But I’m too polite.

So I’ve bought the Peanut some eye patches. The patches are from a great website called Patch Pals and are designed for children and babies who have lazy eyes, amblyopia or strabismus, and for after eye surgeries. I’ve bought a couple and figure I can use the design to make (or enlist the help of my more talented sisters) more with different materials.

Patch_Pals_Baby_Poggle_www.patchpals.com

Patch Pals eye patches for kiddos.

I feel slightly conflicted about this, as if I’m embarrassed of the Peanut and want to hide her. I remind myself of the other positives, like keeping her eye moist as it tends to dry out and cause infections, but really it comes down to me wanting to go out with my gorgeous daughter and not have to answer questions or feel people’s stares and wonder what is going through their heads. I realise within the special needs community I may be pulling some kind of major faux pas. Maybe I am supposed to be a proud advocate of special needs 24 hours a day? I don’t know. I’m new to this. I’m not ready for that yet. I want to be able to go out and just feel like any old mum and her baby running an errand.

I know a baby with an eyepatch may draw some attention as well. But at least we have control of that. We can match her eye patch to her outfit. Fashion patches. I can come up with a quick retort when people ask why she’s wearing an eye patch. “She’s bringing them back into fashion.” Or. “She comes from a long line of pirates.”

When she does get her conformer fitted for her eye in preparation for her prosthetic it will be more medically necessary, but in the meantime we can rock the eye patch for purely cosmetic reasons.

At home she can just be the Peanut. No frills. No patches. And when we go out I’m going to try not to feel guilty for covering a little bit of her up.

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Not the way you figured

“Life’s not gonna go the way you figured.”

I’m 31 years old and I feel pretty priviledged to only just be figuring this one out. I heard this gem while watching Third Watch, a 90s emergency services drama featuring ridiculously good looking New York firemen, cops and paramedics.

During the episode the characters sat and talked about the moment when this had dawned on them. That life wasn’t a story written for them. That it wouldn’t always go the way you had imagined. That you weren’t necessarily the protagonist.

I have had sad and hard things happen in my life. Break ups. Family issues. Grandparents dying. Friends in car accidents. While these events were all hard, when they were over and the grief process had been worked through I was still me, and my life was relatively similar to how it had been before the event. My options for the future were unchanged and while it might have taken a while to work through the emotions attached, I knew that my life could still be the way I envisioned it.

I didn’t expect a 90s TV show to give me pause to reflect, but hearing the character say this made me realise everyone does have that point. Some people will go through most of their life without realizing this, and others will be unlucky enough to discover it at an age where they should be innocent to the realities of the world.

I have led a fairly sheltered life. I have a loving family. I have never wanted for anything and have had food, a warm home, a good education and a future full of possibilities open to me. I have fantastic friends and have had some great relationships.

But at 30, my eyes were opened and I discovered that while we make our own choices and can plan as much as we like, life has a way of turning our best laid plans on their head. Life doesn’t care about your career goals or plans to have however many kids. Things happen. People get sick. People die. And while we can plan, we can’t control everything. Anyone who thinks they can is in for a rude awakening.

It’s not that I thought I could control my life. It’s just that I never thought that certain things wouldn’t eventuate for me. I thought I would get married and have a couple of kids. I imagined having a long career in either writing or teaching, and maybe writing a book one day. I saw myself living to an old age, and when I pictured that I saw my friends and family living alongside me.

I didn’t picture being a solo mum with a special needs child. I didn’t picture hospital stays and operations and a realization that my daughter’s life would not follow the same path as mine. I certainly didn’t imagine that if I did write a book, my daughter would be the inspiration.

But I’ve realized we can’t ever expect that ideal life. There is no ideal. We can’t expect anything. I say this not in defeat, but in acceptance. In the last few months I have seen a few good friends get worrying medical news that could change the course of their lives. I have watched other friends go through emotionally crippling divorce and still others have their parents die too soon from cancer. Adulthood is hard. And at a certain point, just like the Third Watch characters, we realise that life isn’t a story written for us.

Then I see the blissfully unaware who have managed to scrape through so far unscathed. While it’s easy to think they are the lucky ones, I’ve come to realise everyone has their tough times. No one is untouchable. Some are just able to get through more years before they figure it out.

I consider myself to be one of the lucky ones. I know life’s not done with me yet. I’ve got through one hurdle but there will be others. Some will be related to the Peanut, but many will not. But having experienced this jolt in my best laid plans I feel like I am more prepared to appreciate what I’ve got. It sounds cliché’d but I feel like I can find more joy in the little things.

I always thought that seemed like a misnomer. I thought that the people who said they could appreciate the little things did so because they didn’t have the excitement of the big things. They made themselves feel better by finding enjoyment in the little things. They had to. Otherwise life would be miserable.

But I was wrong.

Since the Peanut has been back with me I find myself looking at the world differently. I see a beautiful view and just feel awestruck. I watch the Peanut smile and feel a warmth and happiness I haven’t experienced before. It’s not that I see that view or that smile and think, “this is as good as it gets, I better enjoy it”, it’s that suddenly those things are not small things anymore. There are no small things.

The stunning view I see each day.

Life is not about waiting for the big things to happen. We don’t know how our lives are going to pan out and only the most fortunate will win the lottery and never have tragedy or grief befall them. I don’t think that’s even possible unless you live your life without loving anyone or anything.

I know these revelations are not new or revolutionary. Countless people must have had the same realizations that I’m having after life changing events. I guess what I’m feeling most fortunate about is that instead of feeling bitter that life isn’t what I thought it would be, I just feel thankful for what it is.

I may not have the picture I imagined in my head growing up, but I have a lot. And I’m lucky.

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For the win

The Peanut and I haven’t experienced many wins recently. And if we have there always seems to be a lose just waiting for us around the corner.

We were told the Peanut would be able to see with surgery only to be later told the surgery wouldn’t happen as it would not have a positive affect on her vision; or the Peanut is due to come home with me and on the morning of our homecoming gets admitted to the emergency ward and then the PICU; or the Peanut gets out of hospital only to be readmitted 6 days later for another two week stint.

So it is with great pleasure and more than a small amount of trepidation that I announce our latest wins. The Peanut went without oxygen on Sunday night at the children’s ward and on Monday they sent us home. We have been away from hospital food, midnight nurse visits and heel pricks for two nights.

On her first night out, the Peanut clearly felt she hadn’t made the most of her hospital stay and I woke at midnight to find her grinning up at me with no tubes in sight. She was triumphant and very proud of herself. I wasn’t so jubilant. This meant a nighttime visit to the children’s ward that we had left less than 12 hours before to get her NG reinserted.

Looking mighty pleased with herself.

Looking mighty pleased with herself.

The Peanut fell asleep and I waited until 4am when she woke again to take her in.

Last night I added reinforcing tape and put socks on her hands to try and stop some of the tube pulling. We got to 4am and I woke up to see her once again grinning, proud and tube free.This brings us to our second win.

I sighed and decided I did not want to be making daily 4am hospital runs for the next few months until get gets her mickey buttom put in. I have seen her tube inserted dozens of times and heard a senior nurse explain it to a student nurse. I knew if I went slowly and gently I wouldnt hurt her.

My first attempt saw the tube pop out her mouth giving us both a fright. But on my second go, with the Peanut sucking on her dummy and helping the process by swallowing, I got the tube down, taped and produced a positive litmus paper test to confirm it was placed correctly.

I let out a silent woop and gave myself an imaginary high five. It might seem like a small thing, but being able to reinsert the NG tube myself means independence and self sufficiency. It means not having to go to bed worrying she’ll pull it out. It means no more late night hospital visits to get it put back in. And best of all, it means more sleep for both of us.

I’m a little worried about what the nurses will say when I tell them I figured it out by myself, but I’ll worry about that later.

So today, we are more than 24 hours into a hospital free existence and we are winning.

NB: To anyone worried I am being flippant about a procedure that can cause risk, I’ll just assure you that I do a PH test at every feeding, and tested multiple times to be safe when I put the tube down. If I couldn’t get a good PH reading after inserting a tube I would either try again or take her to the hospital. 

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This too shall pass

Two weeks in hospital has made me acutely aware that I would not thrive in prison. Not that I’ve ever thought prison sounded like a good idea, but I guess I hadn’t really thought through the mind numbing boredom and stagnancy that must permeate those walls when they you know life is happening outside them.

It has been two weeks since I brought the Peanut in with what looked like a cold, but was more likely the tail end of her earlier bronchiolitis, but I’m still stuck in the time zone I was in when I brought her in. I have a mantra in my head on a continuous loop. This too shall pass.

Hospitals are like airports (in addition to prisons) but with worse food. When I travel and spend any serious amount of time in airports I am always struck by how outside of time they feel. Hours get swallowed where nothing is accomplished. When I wait in transit I will sit on my carry on luggage by a power outlet letting my phone charge and watch people pass me by for hours at a time. The world is going on outside the airport, but inside its walls, time means nothing. Days mean nothing. It’s the same in casinos. It’s the same in the hospital. Two weeks have passed and I have been absent in my life. People go to work outside in the real world, but the Peanut and me, we find ways to pass the time, ways to stop the boredom becoming a physical thing.

At least now I can see the sky outside. I can tell if it’s sunny or raining. I can exchange meaningful looks with the pigeons and seagulls that traipse my window ledge. But I feel as though I am stuck in time, waiting to get let out and for time to start again. For life to start again.

The Peanut is doing well. She is off oxygen during the day but still has needed a small amount at night. She is napping now and her oxygen levels are staying high, so maybe tonight will mark her first night off oxygen.

My efforts to stand up to doctors and ask to be sent home with oxygen happened, but quickly fizzled when I was told they didn’t do that for short term needs. After spending the last four out of five weeks in hospital, I feel like short term is a bit of a cruel term.

I will continue to ask, but I find it hard to really push for something when the room is full of doctors and I am wearing red and white polkadot pyjamas. I’ve worn my roller derby t-shirt in today to give me an extra boost of confidence.

I’ve also emailed the Peanut’s regular paediatrician to get her fighting in our corner for release.

Enjoying getting to know this little Nut again.

Enjoying getting to know this little Nut again.

While I am wilting a little in the air conditioning and artificial lights, spending solid time with the Peanut with little to interrupt us has been lovely. We spent two months apart when she was in foster care with visits that lasted only a few hours and felt fleeting and cursory. So while it feels like prison in here, it’s giving us time to get to know each other again. I want her to know it’ll be me who’s there in the night, and me who will get her out of bed when she is crying. It’ll be me who will pat her back until she falls asleep. She has a lot of people who love her, but I’m her Mum, and while I want to be home already, I’ll try to look at this time as our bonding bootcamp, so that by the time we go home she’ll be in no doubt who I am and where she belongs.

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I’m sending back the soup

I have never been good at standing up for myself. I avoid conflict wherever possible. I apologise when I know things aren’t my fault just to settle arguments.

I’m a people pleaser. I don’t complain when my coffee is too cold, or there’s a fly in my soup. I defer to my elders and give far too much respect towards anyone in a position of authority. I don’t rock the boat.

As a kid I would cry whenever a teacher told me off. As an adult I still feel the bite of tears when I get reprimanded in the workplace. For this reason, it almost never happens. Almost every boss I have ever had has liked me and given me a glowing reference. Even in jobs I have hated.

I like people to like me, and feel sick to my stomach sometimes when I know someone doesn’t. It’s part of me that I have always wanted to change, but never really needed to. While I knew aspects of this part of my personality were wimpy and clingy, I also knew some of it sprang from a heightened sense of how other people were feeling. I don’t like to complain, because I don’t want to hurt the person I’m complaining to. But other parts are just my own insecurities. And I’ve never liked that about myself, but I’ve never needed to change.

I see people who don’t care what others think of them and I feel jealous. I wish I could turn off the part of my brain that is hyper sensitive to people’s sideways glances and raised eyebrows.

The rational part of my brain tries to reason with the emotional part and says, “who cares if they don’t like you?”

It tries desperately to convince my emotional half that my boss or teacher or lecturer isn’t thinking about that reprimand hours after it happened, that’s just me. It tells me that it’s ok to fight with someone and be angry for a while, you don’t need to settle every disagreement straight away and you don’t need to apologise when something isn’t your fault, but just be prepared to listen and compromise.

But still, even with this voice giving me sage advice, my bigger half, my emotional half, always wins. I apologise. I settle arguments. I defer. I cave in. I cry when reprimanded. I carry around disputes in my head for hours as if it matters.

In the last week in hospital I have realized this has to change. It may have been ok for me not to stand up for myself when it was just me that was affected, but that’s different now. While I might be vulnerable in some situations, I’m also smart, well educated, healthy and able to figure things out for myself. The Peanut, however, is not. I am her voice until she has one herself. And I need to learn to use it and squash that emotional half inside that is worried what people think, that is anxious not to hurt anyone’s feelings.

I’ve started, but like exercising a muscle that’s never had any use, it’s taking some easing into. I’ve started with small things like telling the nurses no, they cannot weigh/check blood pressure/do a heel prick etc on the Peanut while she is asleep. I now tell them I’ll let them know when she wakes up. I used to sit back and watch the Peanut get upset when doctors or nurses were doing something to her but now I interrupt them and pick her up to calm her. They can finish their procedure when she’s calm.

I’m not trying to say the doctors and nurses don’t mean well. They do. But they have the immediate medical measure on their mind and not necessarily the other things which matter to the Peanut and to me. Yes, maybe her nose prongs aren’t sitting quite the way they should, so she’s not getting the oxygen quite as clearly, but making her lie still while you re-tape her face is upsetting her and that’s affecting her breathing more than a slightly misplaced oxygen prong. Yes, taking her blood pressure is part of your obs and you need to do them regularly, but this baby is in hospital because she is sick and people heal themselves with rest, so don’t wake her.

We have now been in the hospital for what looked like an innocent cold for 11 days. I don’t think I’m projecting when I say the Peanut is bored. We have worked on her physio while in here – I like to think we are doing a stint in prison, and like Sarah Conner in Terminator 2, we will come out buff and strong after days of pull ups (the Peanut does physio, my own fitness programme has gone out the window with the daily hospital ice cream and jello – incidentally the best thing on the hospital menu) – but her quality of life in hospital is not as good as at home. She is either in her bed, or on my bed. Always flat on her back, with nothing to prop her up, or support her. Aside from the “whiff” of oxygen they have her on during the night she is on no support that I can’t give her at home. They stopepd suctioning her days ago and merely give her saline drops down the nose to help any congestion, something I can and have done at home. So tomorrow, I’m going to ignore any disparaging looks from the doctors and suggest they let us leave with some oxygen at home for the Peanut at night until she is healthy enough to go without.

I can’t promise I won’t cave when they tell me this is not going to happen. But a younger, pre-Peanut version of me wouldn’t even have brought it up, so I’m getting there.

The hospital is the best place for very sick babies. But the Peanut is not a very sick baby anymore. She’s a baby that confuses the medical profession, but that doesn’t mean she should be kept around them for monitoring.

In a former life I would have done everything the doctors said without question. When the Peanut was just a few days old, a doctor asked if he could use the Peanut as an example for a group of student doctors doing their rounds. We were awaiting results from tests after a terrifying few days of being told potentially devastating news, and I was told by a nurse that I could say no, that we didn’t have to go along with it, they could find another baby to use. It had never occurred to me before that this was an option.

While it doesn’t come naturally for me, I’m starting to exercise that muscle. I’m starting to send back my coffee when it’s cold and call the waiter over when there’s a fly in my soup. The Peanut deserves that. I do too.

I wrote the other day about the Peanut reaching her milestones. This feels like a milestone of my own.

A few months ago all I could do was cry for her, now I'm standing up for her.

A few months ago all I could do was cry for her.

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