The bottom of the well

When you combine a tendency to cry when stressed, angry, sad, tired, under pressure and forced to speak to a large crowd, with five very hard months you get a lot of tears.

My eyes have produced more salt water than I ever thought possible. A serious bout of sobbing was almost impossible to avoid each day. So it came as a pleasant surprise to realise that today, I have gone over a week without shedding a tear or suppressing a sob. I have not once had to look up to try and hold the tears in my eyes and hope they dry before more push them onto my cheeks. I haven’t felt the tell tale lump in my throat, or had to say “I’m sorry,” to whoever I am talking to as I feel my resolve crumble.

The last time I cried, the Peanut had just been moved to a ward in the hospital and it was our first night back together. I got maybe three hours sleep and woke many times to comfort the Peanut as they tried to wean her off any oxygen support. I felt that 3am desperation that feels like no other. In the light of day the situation seems fine, benign, but at 3am, on little sleep, the world is a scary place.

Now, a week later, we are home. And I have managed to not only not cry for a week, but also feel far from tears. I haven’t wanted to cry or felt I had to. As I type this I realise I have cried once this week, but I’m deciding not to count those tears as they were shed watching Lesley Knope and Ben Wyatt’s wedding proposal on Parks and Recreation, and those kind of tears are the sort that for me will never dry up.

I’m not naive, I know I will shed many more tears for the Peanut, and for me. With three potential surgeries in the next few months, there will be a lot to worry and cry over. But I’m starting to feel like the people who told me this was the darkest time and that things would get easier were right.

It doesn’t feel like it when you’re at the bottom of the well. You can’t see a way back up to the surface. The walls are too steep and slippery and the mouth of the well too high. And the truth is, there is no way back up to that surface that you fell in from. You have to find a different way. Dig yourself a tunnel. And when you do, you’ll find yourself not in the same spot as where you fell in, but somewhere new.

I won’t try to say it’s better, but it’s not the bottom of the well.

top_mommy_blogs_signature_banner

Temporarily tubeless

Seven nights in the PICU, and two nights and counting in the children’s ward. I am quietly harrassing the doctors to discharge us as the Peanut is now on no support with no need of extra oxygen. She’s back to her old self, smiling, napping, blowing rasberries and sucking frantically on her dummy.

Today, before her bath, the Peanut (with a little clumsy help from me) managed to pull out her NG feeding tube. She had just had a feed, so I decided not to tell the nurses just yet and give her some time without any tubes.

This is the first time I have seen her face without tubes going up her nose since she was about 2 days old. Too lovely not to share.

 

IMG_1620.JPG

IMG_1623.JPG

IMG_1627.JPG

IMG_1629-0.JPG

IMG_1611.JPG

We’ve got this

Eva with the minimal breathing support, sleeping soundly.

The Peanut with the minimal breathing support, sleeping soundly.

We have been in the PICU for a week now. This time last week I was sitting beside a very distressed baby who had not yet been intubated. Now, a week later, she has the lowest level of breathing support, nasal prongs on low flow, and we are waiting to be moved up to a ward. After that we will have a night or two more and then back down to our home hospital.

The Peanut is breathing normally again and sleeping soundly. I am torn between wanting her to wake up so I can give her a bath, and wanting her to sleep because she looks so peaceful.

With CHARGE Syndrome the likelihood of another PICU visit are high, but I’m hoping going into summer will see the Peanut stay out of respiratory trouble.

We are on the homestretch and I cannot wait to get this little bug home. I can’t help but feel she wanted to give me a scare to remind me how lucky I am to have her around. It feels amazing to me that I ever doubted I wanted her in my life.

This wasn’t how I planned her first week back with her Mama, but I’m very glad she is back with me and I could be there when she needed me. We can actually get on with it now and start living, instead of this crazy limbo we’ve been in for five months.

Here they come with the trolley to go to the wards. We’ve got this.

It takes a special person

 

 

photo (3)

The Peanut intubated and sedated.

If you read blogs written by special needs parents, you will recognise the post where they talk about people asking them how they do it? People look at their lives, their family’s lives and they ask “how do you manage?”

I haven’t been asked that question yet, probably because I haven’t really been “doing it” until now. But something I have heard, from people without special needs kids themselves, is that it takes a “special person” to be a parent to a special needs kid.

When the Peanut was born and the problems started surfacing, I wasn’t sure whether I could handle being her parent. Numerous people said, “it’s ok to feel this way. It’s a lot to accept. It takes a special person to do this.” I didn’t feel like a special person. I was scared. I wanted the Peanut fixed. I wanted my life to be the life I had envisioned a few days before when I was still pregnant, and the world had not closed up shop around me.

When they mentioned these special parents to me I pictured saintly middle aged women who were nun like in their devotion to these children. Parents who had the “I’ll love them no matter what” attitude right from the word go. I felt ashamed that that wasn’t me, but it just wasn’t. Not then.

People weren’t trying to scare me or tell me I couldn’t do it. They were trying to make me feel better because I didn’t think I could.

But what I heard, instead of the solace they were trying to offer, was that in order to be a parent to the Peanut I would need to be something bigger than myself. Something better. And as I slowly paced the corridors of NICU, that version of myself was nowhere to be seen.

Now, five months later I realise those special people aren’t just walking around waiting for children to land in their laps. The children, like the Peanut, make them into those special parents by virtue of being there.

I don’t want to sound evangelical, or twee, or like I’ve seen the light. Because I know there are going to be hard times. I am living in one of them right now, with the Peanut still supported by CPAP in a bed beside me. But when I look at how I have changed in the last five months I am starting to see that person who can be the Peanut’s mum. I’m becoming that special parent.

I am braver than I was five months ago. And that’s not just in terms of being in hospitals and listening to doctors tell me bad news. That’s across the board. On my recent holiday to Hawaii with my sister I found myself keen to try different things I would have shied away from before. A former height phobic, I jumped into waterfalls and looked over cliffs. I tried surfing, and kayaked 17 miles, despite arms that had not seen muscle in months. A former nervous flyer (due to the stress of airports and customs rather than the plane itself), I cruised through the process without a raised heart beat or sweaty palm. I feel like I can be myself more with new people, because heck, what have I got to lose?

I’m better at reaching out to people. I’ve never been very good at asking for help, but now I know I need it and that people want to give it, so I let them.

I had worried in the days after the Peanut’s birth that my empathy had disappeared. I would look at other mothers in the NICU whose babies were in good states, but still needing help, and I would feel nothing but sorry for myself. That passed, thankfully, and I feel my former empathetic self returning.

I am more self confident and determined than before. Facing solo parenthood is not something I ever thought I would be doing, least of all with a baby with very special and particular needs, but most of the time I feel like “I got this”. I feel confident in my abilities to advocate for her and do what’s best for her. I also just feel more confident in myself. I have gone through a lot and have come out the other side, not scarred, but strengthened. And that feels good. I feel good about my job (and looking forward to getting back to it) and my ability to do it. I feel good about what my body has accomplished and look forward to returning to the pre-pregnant fitness I had.

I have always been a cryer, or “quick to tears” as my Granny used to say. And while that hasn’t gone completely, I do feel they are being kept at bay a bit more now. I can function without crumpling quite as quickly.

Basically I feel happy, strong, and positive about the future. Which is not something I thought I would be saying while the Peanut almost nears a week in the PICU.

I do think being a parent to a special needs kid requires a special parent. But what they don’t tell you, and what they can’t know for themselves, is that those special parents, just like any parent, aren’t born, they are made. And that process is different for everyone. I don’t quite feel like the self sacrificing middle aged nun figure I had in my head, but I don’t think that’s what the Peanut needs. I think she needs me.

The Peanut, today, after her tube had been removed. No more intubation but she still needs CPAP to help her.

The Peanut, today, after her tube had been removed. No more intubation but she still needs CPAP to help her.

top_mommy_blogs_signature_banner (1)

She’s on the mend

She’s on the mend.

She’s moving in the right direction.

Slowly.

The Peanut getting a rare but much waited for cuddle.

The Peanut getting a rare but much waited for cuddle.

Since she was admitted to Starship Hospital on Saturday night she has been switched to CPAP and off full ventilation. The nurses tried multiple times to reduce her support but each time they did The Peanut would breath for herself for a short while before becoming tired and then we would see her oxygen saturation levels drop. Today is Wednesday, and yesterday, she finally switched to CPAP without dropping her oxygen levels. She is now breathing by herself with support from the machine.

She has woken up repeatedly today and seems to greatly dislike have a tube in her mouth. Go figure.

The next goal is to continue dropping her pressure support through the CPAP until we can ex-tubate her and get the tube out of her mouth.

It has not been fun seeing her in a state of discomfort. Every couple of hours she wakes and screws her face up in a tragic sad face. Her face contorts as if she was trying to cry, but can’t. She kicks her legs and tries to bring her hands to her face to push and pull at the tubes and wires sticking out of her.

Then the nurses suction her lungs and she relaxes back into sleep again. While the tube allows them to easily suction any fluid out of her lungs, it also causes irritation which leads to more fluid.

Despite the Peanut’s discomfort and my own at watching her, I wanted to acknowledge just how amazing Starship Children’s Hospital is. The Peanut has met many great nurses and doctors in her little life. She has spent so much taxpayers’ money with tests and appointments and procedures that it pays not to think too hard about what we would do if New Zealand didn’t have public health.

Sitting in my chair next to the Peanut’s bed I feel so thankful that I live in New Zealand and have access to this kind of care. The Peanut has her own nurse who almost never leaves her side. She watches the Peanut’s every wiggle and squirm and reacts to every beep and whistle of her machines.

When I arrived on Saturday night, exhausted, I was informed by a nurse that this wasn’t like on tv, they wanted me to go and get some rest. I smiled inwardly. I wanted to go and sleep too, so was happy we were on the same page. While in the NICU with the Peanut I read into the nurses questions of when I would be back and how long I would stay for with anxiety and self judgment. In hindsight they were asking simply because they needed to know my plans in case they needed to get in touch with me, but I heard their questions with an undertone of judgment whenever I left.

It was such a relief to hear the nurse say they wanted me to leave. I was exhausted and teary. The Peanut was sedated and I wanted to be unconscious too.

Since we have been here I have had everything explained to me as it happens. Both the nurses and doctors have taken the time to talk to me and answer my questions and I have never once felt like the Peanut or I was being any trouble to anyone. The nurses have been friendly and chatty. Attentive and empathetic. They seem to get just how hard it is to be a parent of a sick kid, and instead of being desensitized to it they try to meet that fear and worry with compassion and information.

In addition, I’m staying at Ronald McDonald House, a five minute walk from the Peanut’s room. I can leave the hospital to get away but I’m close enough to feel like I’m with the Peanut.

I didn’t want to come to Auckland, mostly because I knew it meant the Peanut was really sick, but I also knew that she would be in the best possible place once we got here. I have heard parents rave about how fantastic Starship Hospital is, how great the staff are, and how caring the nurses are.

For the record, they were right.

top_mommy_blogs_signature_banner (1)

THANK YOU!!!

In the last five months I have needed more help and support than I have ever needed in my life. Sometimes I needed someone to talk to. Other times I needed help with making sure I fed myself. There were the times I needed a few words of encouragement. And then the times where I needed a roof over my head.

I have never been very good at asking for help, (when I was in labour I tried to send my Mum and the Peanut’s Dad home to get some sleep, but thankfully they both decided they knew better and stayed) but in the last five months I have had to get good at it and to identify what I need help with.

I want to acknowledge all the help and support I have received because when I think about how many people have gone above and beyond for me it makes me feel so thankful and lucky.

First off. My family. My Mum was there during the Peanut’s first few weeks. While I worried about the Peanut, she worried about me, ensuring I got to talk to social workers and doctors when I needed it. I was too overcome to advocate for myself, so she stepped in and took over for me. She ensured I ate regularly and left the hospital to get fresh air. She drove multiple times the two hours between our cities when I needed her, and didn’t wait to be asked before turning up to help. My Dad has been my Mum’s support and has been there to cook me delicious meals when I visit home and look after the Peanut when I need a shower or a break. They have both been consistent and amazing in their love and support for me. Always being there to listen and respond to my ideas and thoughts.

My younger sister and her boyfriend have provided a much needed home for the last two months while I thought things through. After buying a new house they opened up their home to me and looked after me in probably my darkest few weeks. It was so fantastic to have a warm, loving house to be in. Not to mention getting to hang out with their adorable kitten.

My older sister, who lives in Vancouver, has been fantastic as virtual support, but more recently as my holiday buddy in Hawaii when our parents sent us on holiday. She put aside her own feelings about certain activities, like surfing and horse riding, and jumped in with both feet and a great attitude to the things I wanted to do to ensure I had a relaxing time. And we had an amazing, rejuvenating, memory filled time.

Then there’s my extended family. I come from a big family on my Dad’s side and a slightly smaller family on my Mum’s. Since the Peanut was born I have received emails, phone calls, presents and visits from both sides of my family, reminding me how amazing it is to have a big extended family. Since I have been in Auckland with the Peanut I have had multiple visits from Aunties and Uncles bringing groceries and hugs and words of support.

Next up has to be my good friends who are the Peanut’s honorary family and our new housemates. They invited me and the Peanut to stay when we first got out of hospital and provided a warm, happy home for us for those six weeks. They then went above and beyond the normal call of friend duty and invited us back to live with them when the Peanut came home with me. They hate when I tell them how lucky I am to have them as friends, but really, I cannot thank them enough.They are amazing people who restored my faith in humanity when it reached a low ebb.

The Peanut’s foster family are another family I will be forever grateful for. They loved and cared for her like she was their own and I hope they continue to be part of our lives for a long time.

I would also like to thank Peanut’s Dad’s family for their unwavering love and support of the Peanut and their continued support of me. I will be relying quite heavily on their generous help once we get the Peanut home and I have so appreciated having such a big supportive family in law, regardless of my relationship with the Peanut’s Dad. They always made me feel like one of the family and continue to do so.

Next we have the virtual support. I never guess when I started this blog that this is where I would be. I thought the story would become a normal parenting one when the Peanut was born, but it has become something quite different. I have made friends with some amazing people who have made a real difference in my life. A particular shout out to Lydia Unicorn for providing me a perspective I desperately needed to hear and helping me see things from a new angle, Yo Soy La Lay for always having a kind word to say and inspiring me to be brave, and The Journey of Master T for being a friend and confidante going through the something very similar and making adjustments to life in an equally difficult time. While we have never met, I consider these women to be close friends and respect them all greatly. And to everyone who offers words of support through the comments, thank you! I know I judge myself harshly, and I worried you would too, but there hasn’t been an unkind word said to me since I started blogging and it means a lot to me.

Another key support for me has been the Longest Shortest Time Mamas on facebook. This group originated through Hillary Frank’s amazing parenting podcast The Longest Shortest Time and is home to some of the most supportive, caring, non-judgey mothers out there. When I have needed a smile and a morale boost they have come through for me with words of encouragement and love.

And last, but definitely not least, my friends, both through facebook and in the real world. I have received the most amazing messages of support and love from friends from all parts of my life. I have heard from primary school friends, old work friends, even childhood friends’ parents have come forward to offer support. I have had food packages sent from so many lovely people and presents from more people than I thought I knew. While in Auckland I have already had visits and food delivered by my favourite Auckland crew and two home cooked dinners to keep me going.

I have always thought of myself as being shy and pretty introverted, but in the last five months I have realized while I do like alone time, I love being around people. And I love the people who I have around me! I have some of the most amazing family and friends, and while it has been an incredibly hard five months, I do feel like it has shown me how lucky I am to have all these people in my life. I always knew I had great family and friends, but thanks to this experience I will never take them for granted again.

I hope none of my friends and family are in a situation like I am, but if they are, I will feel honoured to be able to return the favour and help any of them even half as much as they have helped me.

Thank you!

top_mommy_blogs_signature_banner (1)

The first 36 hours

The Peanut has been in my official care for almost 36 hours, but it hasn’t been quite what I planned. She’s with me, but she’s also surrounded by nurses and equipment. New Zealand’s top children’s hospital is her home right now, instead of at home with me.

I was due to pick her up at 10am on Saturday morning from her foster family, giving them a decent amount of time to say goodbye to the little girl they love so much, and giving me plenty of time to spend with the Peanut before I introduced her to my close friends at my slightly belated birthday get together.

I went to bed on Friday night excited, but reminding myself to enjoy my sleep as my nights of undisturbed rest were about to come to an end again. I was woken at 1.30am by my phone ringing.

No one rings for a good reason at 1.30am.

I missed the call and frantically checked my phone. There was a text telling me the Peanut had been taken to the hospital and to call immediately. I called her foster mum, and was told she had been having trouble breathing and she had taken her in to the emergency department. She handed me onto a soft spoken English doctor who had met the Peanut when she was still in the Special Care Baby Unit all those weeks ago. I was informed to get there, but not to speed while driving. I could hear the Peanut in the background frantically sucking in air.

I raced to dress myself, picking up the first items I saw. Later, when I regained some composure, I had a realization that I had no idea what clothes I was wearing, and felt thankful the first thing I grabbed was a plain black tshirt and jeans.

Two of my very good friends and their adorable nine month old have opened their home to the Peanut and myself for the next little while, as we get on our feet. As I tried to lace my sneakers my friend called out, “Tessa, are you ok?”

I coughed out the words. “She’s in hospital. I have to go now.”

She quickly dressed and informed me she would come too.

My instinct was to tell her not to worry, but I couldn’t speak so just nodded and carried on clumsily tying my laces.

The ten minute drive to the hospital felt tortuously long. I don’t know what I would have done if I hadn’t been following her car on that drive. I kept my eyes locked on her tail lights and concentrated on staying on the road.

As I drove, my thoughts went to all the darkest places it could and I thanked myself profusely for already coming to the decision to take the Peanut home. I felt satisfied that I had not made that decision out of fear, but out of love. I said outloud, “don’t you dare leave now,” in a choking sob.

Since I had morning sickness I have found my gag reflex is much more sensitive, and when I get stressed the urge to retch sometimes is overpowering. As I drove, I found myself having to concentrate on keeping my hands on the wheel as I retched over and over with nothing coming up. Even thinking about it now, I can almost make myself convulse.

I got to the hospital and as I walked from my car to the emergency exit I put my hand in my pocket and felt the screw cap of one of the Peanut’s pumping tubes. I held onto it tightly and walked through the sliding doors.

The Peanut was on a table wearing only her nappy. He chest was heaving with the effort to breath and she was crying. The Peanut is a pretty happy baby. She doesn’t cry much and when she does, it’s quiet. She wasn’t quiet now.

They were holding an oxygen mask over her face and a doctor or nurse had to stay by her head at all times to hold it there. We weren’t allowed to pick her up to sooth her, even though everything in me knew it would help to calm her down.

The doctor told me they didn’t know what had caused this deterioration.

She was in the ER for around five hours while they waited for a cot to be set up with CPAP in the ICU. Our local hospital doesn’t have a PICU so they let me know she would quite likely be either going to Wellington, a 20 minute drive away, or up to Starship in Auckland, a one hour flight away.

In the ICU they upped the CPAP to its full volume and let me know if she went down hill they would have to intubate and then she would be sent to Starship. Her foster mum and I looked at each other and hoped it wouldn’t come to that.

But within the next few hours she didn’t improve and while her oxygen sats were good, she was working far too hard to reach them. Within a few hours it was clear she would have to be intubated. She wouldn’t sleep and wriggled uncomfortably trying to pull at her monitors and CPAP mask.

The paediatrician in the ICU told us the Peanut had bronchiolitis, a viral infection of the lungs. There was nothing they could do to treat her, but once she was intubated we could wait it out and when the virus had been beaten she could be weaned off and start breathing for herself.

While bronchiolitis is far from ideal for a baby like the Peanut, I was just so glad they had a name for it and we could eliminate the possibility that her breathing had deteriorated for no reason.

The Starship crew were called and by 6pm that night, 16 hours after I received the phone call, we were on a lear jet on our way to Auckland.

This was all last night. Now, the Peanut’s father and I are in Auckland waiting for her to improve enough to extubate her. They have experimented all day with lowering her oxygen and pressure support, with some success, but now over night have upped her support and sedation to help her fight the virus.

While the PICU is not where I imagined I would spend my first few nights with the Peanut, I am not as scared as I was in the NICU and SCBU all those months ago. In fact they feel familiar in an almost comfortable way. I know what each of the numbers mean on the machines. I don’t jump as soon as a monitor beeps or squeals. I speak the language of the nurses and can understand what they say to each other in handover.

On that drive to the hospital I thought about my life and felt so thankful that she is in it. I saw her smile behind my eyelids and clenched the steering wheel wishing her to be ok.

It feels different this time around too. I feel stronger. The tears are not quite so close to the surface at all times and I can listen to the doctors and ask questions without feeling like I will collapse. I’m obviously worried about the Peanut and her recovery, but also feel confident that she will be ok and that she is in the best place to get that way.

While this isn’t how I wanted my first days with the Peanut to be, and while most of me is focused on thinking about her recovery, another big part of me is still excited that it’s me standing beside her bed. That I can talk to the nurses about her, knowing she is my daughter and I know her best. Knowing that when she recovers and gets better, she will be coming home with me. This is just a moment in our life together. One we will both recover from.

top_mommy_blogs_signature_banner (1)

The Peanut is coming home

It’s time to come clean. Get ready for a long read.

While people have called me brave and strong and a great mother to the Peanut, I have been keeping something quiet. For the last two months, the Peanut has not been in my care. She has been in the care of a wonderfully supportive, caring family who provide foster care to some of New Zealand’s most in-need children.

I have kept this quiet for some obvious reasons; I was judging myself for my actions and didn’t feel I needed to hear the judgment of the internet; and I was unsure of the final outcome and what my ultimate decision would be. It didn’t feel it was right to share it.

After she was born and the bad news started flooding in, the hospital sat us down to talk to the social worker dedicated to the NICU. She talked about the grieving process. Explained that I was mourning the loss of the baby I thought I was going to have. This was all brand new to me. Special needs children were not something I was familiar with. So I asked what our options were. She took us through the options which included adoption, foster care and keeping the Peanut. When she first said the word foster care I felt the bile rise up in my throat. I asked her, “how could we do that? People know we have had a baby”. Of course I wasn’t just worried about what people would think. At that point the Peanut was just a few days old and I already loved her to bits, but my own feelings of judgment immediately made me realise how we would look to others.

I put it out of my head. When I stood over her crib I said “we’re taking her home.”

Within a day or two I sat with the Peanut on my lap as they did the hearing test. I saw the line that indicated her hearing fall well below the green pass area. I looked around the room, at the hearing instructor and I felt a great wave of panic and release come over me. I had reached my limit. I could not do this anymore. It was too much. I put the Peanut back in her plastic hospital cot, her face red and irritated from the gels they use in the hearing test, and walked out of the NICU to give everyone the bad news.

I felt I had reached my breaking point. Her hearing was where I had drawn the line. I had bargained with myself that I could handle blind with brain and heart abnormalities, but I couldn’t handle deafness being added to that mix. I had reached my tipping point and in some ways it felt good. I had set up this line before I found out, and now that I had I felt like I could do what came next knowing it was the right decision.

We talked to the social worker and began the process of finding her an adoption placement.

When I look back on my notes and appointment times from this time I realise we met with the adoption agent when the Peanut was just six days old. Six days old. Not even a week in this world.

He talked us through the process and sent a call out nationwide to establish interest. There were three families, across the whole of New Zealand who responded. They were scattered across the country and I thought about the benefits of each location in terms of the hospital and resources.

During this time I continued to express, and spent every day with the Peanut. If I was going to do this I wanted to ensure I had done my best by her. I wanted to continue to advocate for her and be the best mother I could until I wasn’t anymore.

When the number of potential adoptee families dropped to one, I wasn’t surprised. I was told they would be contacted and a meeting arranged. After I got off the phone, I sat in the hospital looking down at the Peanut in my lap and wept. Tears rolled down my face onto hers. Nurses stopped by to ask me if I was ok, and finally one offered me a private room to spend some time alone with the Peanut and my growing puddle.

I was devastated but I felt like if I could give the Peanut a solid family who would love and care for her, I would be doing the best I could for her.

When the family fell through a mix of panic and relief surged through me. I firmly believe I would have gone through with an adoption. I would have missed that little girl every day, and who knows what kind of life I would have had, but I felt like she would be ok and that was the main thing. When it was taken off the table as an option I was hemmed in, but had been relieved of the permanence of adoption.

The next weeks were spent organising a foster placement for the Peanut. I won’t bore you with the complex government processes and meetings that this entails, but lets just say on the whole it’s not a pleasant process and one I hope never to repeat. The government employees working with us turned out to be fantastic, and the hospital staff were so supportive, but trying to give up your child is not something the organisation is used to seeing.

Over this time we had a couple of pieces of news which began to change things for me. The Peanut’s MRI scan results improved so that we now saw her frontal lobe was not nearly so affected as originally thought, and the opthalmologists thought they might be able to return sight to her eye (this turned out to not be true). Each time I received a piece of news like this my spirits lifted and I felt like, that’s it, I’m keeping her. But over a couple of days the feeling of despair would return and I would go back to thinking foster care was a better option.

I had been given advice that in terms of getting help for the Peanut and placing her, I had the most control while she was still in hospital. Once she left hospital, I was told, it would be much harder to get the organisations to listen to me and act. So as the Peanut’s list of tests and procedures shrank, I got more and more anxious about what was going to happen to her and us.

So the day arrived that the Peanut was due to be discharged. The plan was that she would come home for six weeks. At that point we would have a family conference where we would agree as to what would happen with her future. She would go into foster care which could last up to a year before they could place her as a seriously disabled child in another form of foster care. If anyone wanted to take the Peanut out of foster care they only had to give seven days notice. I held onto this fact and repeated it to myself like a mantra. Seven days. Seven days.

Quick update: The Peanut’s father and I broke up shortly before the Peanut was due to be discharged. Out of respect for him as the Peanut’s father, and someone going through his own traumatic process, I will not go into the whys and what happened.

I was left to decide the Peanut’s future and what it would look like for me. I would love to say that our separation was why she went into foster care. That I found I couldn’t do it by myself. Or that it was just him who didn’t want to bring her home. But that wouldn’t be true. I had reached a breaking point and I didn’t know how to come back from it. While the deafness had been my final tipping point, it felt to me like the Peanut had to make miraculous progress before I would flip back in the opposite direction. I was aware this didn’t seem fair but I couldn’t help it.

The Peanut and I shared six weeks together where we got to know each other and bonded. I continued to express and she had three months of expressed breast milk. I started to look at the foster care time as a chance to regroup. To get my head straight and figure out if it was going to be able to raise the Peanut by myself. I needed to answer some logistical questions before I made any final decision.

Was I going to be able to work?

Would there be childcare for the Peanut with all her additional needs?

Could I afford to live with just the two of us?

Then came the day that she went into care.

There seems no way to express how this felt without resorting to cliche. I could feel an elastic band between us, stretched taut, but not broken. When ever I thought of her, or looked at a photo on my phone, I felt the band twang and pull at me. I felt physical pain at being away from her and ached thinking about what she was doing at each moment. When I woke at 2am for no reason, I imagined she was crying and needed my care.

Her foster mother, not used to this kind of arrangement, did an amazing job of adjusting her expectations to parental involvement and let me pick up the Peanut and take her for afternoons and then soon whole days. When I wasn’t with the Peanut I was investigating my options and meeting with support people and potential day care options.

I kept a lot of this to myself. My research was done fairly quietly and I pieced together in my head what our life might look like.

A decision was forming in my head, but I wasn’t brave enough to quite hit the accelerator pedal. I flip flopped and played mental gymnastics with myself until I was exhausted. People told me “there is no right decision”. Which sort of helped, except I didn’t believe them.

Then my parents sent me away on a holiday with my sister. We kayaked. We swam. We surfed. We walked. We read. I felt for the first time in months a sense of calm. And it wasn’t because I was far from the Peanut, and far from my worries. It was because the distance and distraction had allowed my brain to work through the last of its concerns.

I wanted the Peanut back.

After waiting for the scales to tip back I finally realised it didn’t matter. I didn’t care if cochlear implants would give her hearing (of course I care, it just wasn’t a deal breaker anymore), I wasn’t waiting to see if she could walk before I loved her. I already did. I didn’t need her to be better. The scales were already tipped. And I wanted her back.

When I got back to New Zealand I started the wheels in motion and now, two weeks later, I am four nights away from having my baby back where she belongs. I am excited and happy. I feel sad that I have missed almost two months with my baby girl, but I know I needed that time to get my head straight. I have never felt so confused or sad or desperate in my life, and I hope to never feel that way again.

I know some parents, most parents even, would not have done what I did. I know there are parents of special kids all over the world who didn’t need two months to get their shit together. But I also know, those two months will make me a better mum and a happier person.

I don’t judge anyone who has to face this decision. It’s an impossible choice that makes you feel damned if you do and damned if you don’t. For a while it felt like I was sinking and that no path lead to a happy life. People were right. There is no right choice. But I know I have made the right choice for me.

I debated writing this post many times. I knew I wasn’t brave enough to write it if the Peanut had stayed in care. But I wanted to acknowledge this time. I’m not ashamed. This is a hard process. You go from having one life to another in a matter of moments, and it takes time for your head to catch up with that switch. Your life gets turned upside down and then shaken like an etch a sketch, so it feels only natural that it takes some time to recover. I’m happy to have reached this decision, but like to think if I saw someone else going through this I would keep an open mind about what they might decide. Life is not obvious sometimes. The choices we make aren’t always black and white.

When people told me I was strong and brave and that the Peanut was so lucky to have me I felt like a fraud, like if they only knew the truth, what would they say then? But now I don’t care. The Peanut is coming home.

IMG_1306

When platitudes start to make sense

When the Peanut was born, people would tell me all number of platitudes. The most common from nurses and hospital staff was that the Peanut “is not her diagnosis”. Internally, I scoffed. I was faced with another piece of bad news each day leading to an overwhelming list of medical issues.  This statement did nothing for me. It didn’t help me or the Peanut and it felt like it came from a place I would never reach.

But now, 15 weeks later, I’m starting to get it.

In a recent update from the Peanut’s paediatrician she outlined where her medical situation was sitting. Her paediatrician is a lovely caring woman, but tone in medical summaries is never warm. The reports are clinical and medical and lack any of the heart that being around the Peanut brings.

And then I got to this phrase:

“While development is progressing, the gap between the Peanut and normal is widening.”

In my head I saw the Peanut in her hospital bassinet alone at night, as she would have been each night, with wires coming off her. The words are like the hospital itself. They isolate me from her, from the people who love her. They make her something other than “normal”. They turn her beautiful smile into a disappointment and a sign of late development, rather than something to be celebrated.

The words put distance between us, and I’m sick of it.

I’m sick of hearing her diagnosis and letting it colour how I feel about her. Sick of hearing diagnosis and seeing her differently. I’m sick of hearing only the negatives. The Peanut is my baby and she is not her diagnosis. She is a person. With a beautiful smile.

If I could talk to myself 15 weeks ago, I’m fairly certain I would have about as much luck convincing myself that “the Peanut is not her diagnosis” as the nurses did, but I’m not going to feel bad about where I’ve come from. I’ll just feel good that in the place I’ve ended up, the platitude now makes sense.

top_mommy_blogs_signature_banner (1)