Bring Me (Little Miss) Sunshine

This time four years ago I was in the RVI, having given birth at 4.57am to Jennifer Anne Cole, the most amazing and beautiful little girl I’ve ever given birth to! The first thing I said to her as she was placed immediately on to my chest was “hello baby”.

I had been admitted to the RVI the day before, having been referred to the maternity assessment unit by the community midwife after a regular 38-week appointment. The RVI did various tests and checked my blood pressure regularly. When the results came back, Graham and I were taken into a room and “informed” (in a manner of speaking) by an abrupt doctor, whom we thankfully never saw again, “so you know you’ve got pre-eclampsia, right, and will have to be induced?”. (That is one of the very few negative experiences with NHS staff that I have had (and I’ve had some experiences!).)

Graham was, as he later showed with Leo, a super and unwavering “birthing partner”. The only gently mocking thing that I can say about him in that role is that, as soon as Jennifer was born, I asked whether it was a boy or a girl. Graham said “it’s….a…..girl” very deliberately and slowly with the hint of an Aussie-like inflection at the end as if he was asking a question? He said afterwards that he was so afraid of getting it wrong that he wanted to be absolutely sure that he was right before he confirmed it to me!

The midwife told us the weight in kilos and then converted it into pounds and ounces for us. She was 7 pounds and 14 ounces but, later, I confidently assured Graham that the midwife had said she was 7 pounds and 12 ounces. I “knew” that, as there were 14 ounces in a pound, 7 pounds 14 would therefore have been expressed as 8 pounds. Graham (wisely, I think) decided that it wasn’t the time to challenge his argumentative (at the best of times) wife immediately after she had given birth to his daughter without a wink of sleep in 24 hours. He duly informed everyone that she had been born and weighed 7 pounds 12.

We realised our (my) mistake later that day and sent out cards (confirming the correct weight) several weeks later. One person had very kindly ordered some lovely customised vests with Jennifer’s name, date and weight printed on them. However, she was too quick off the mark and had understandably gone from the details in the original message, before the cards went out with the correct weight! We still have the vests: they remind me fondly of the one time (that I acknowledge) that I was wrong and Graham was right.

A Flash of Light (But Her Golden Coat is out of Sight)

Our girl has been, and continues to be, an overwhelming and unadulterated blessing in our lives. She is a real mixture of Graham, me and others around her. She is gentle, caring, sensitive and kind. She has shown this as a big sister in the way that she’s acted with Leo ever since he was born. When she met Leo for the first time and gently said hello and put a toy rabbit that she’d chosen in his crib, I could have cried (and possibly did)! More recently, she has shown her kindness and gentle nature in holding my hand as she helps me from room to room – I can’t convey how pure and kind her tone of voice is when she asks how I am during those moments.

Jennifer is funny, intelligent and articulate with a real sense of joy and fun. Her imagination and curiosity are boundless; she’s interested in just about anything and everything. She is also stubborn, pedantic and has an amazing memory. She is gregarious and sociable but has an independence that I never had at that age: she will not just “go along” with things for fear of standing out.

On Saturday morning, she went to her first ballet lesson, as she has shown interest recently in learning to dance and loves “balancing” in precarious positions. Neither Graham nor I can take credit for that one! She went into a class as the youngest of 20 kids and she had never met any of the other children or the teacher before. Graham said that she was tentative and needed reassurance from him but she enjoyed the hour-long session and wanted to go back. At that age (and even much older) I wouldn’t have made it through the door as I was so shy!

Sunshine on a Rainy Day

She has been extraordinarily resilient and strong since our world changed on 1 September last year. We’ve hopefully got the balance right between not overwhelming her with information but not scaring her with fears that things are being hidden from her. We have given her details of what to expect imminently and encouraged her to ask questions. She knows that I’m currently having special medicine most days and that it makes me tired and lose some of my hair. Importantly, she knows that she can’t “catch” my bad leg and head.

Rainfall on a Sunny Day

I am desperately sad for me that my chances of supporting my children and watching them grow up and further flourish are low. I am even more desperately sad for them and worry about the effects that my illness will have on them in the short-, medium- and long-term.

Sunny Side Up

I truly believe (although I accept that I’m biased) that the world is her oyster. I wish for her (as I wish for Leo) to know and believe that she has and will have amazing opportunities and choices ahead of her but that there is no pressure to take any particular road, just as I believed that to be true for me. I “just” want her to be happy and be true to herself.

I’m incredibly grateful to be here to share and celebrate her fourth birthday. We are living life as best as we can and our little lady is one of the two biggest reasons to get up and keep going every day. Our children’s lives, experiences, development, sense of fun and adventure can’t be on hold indefinitely. That’s why I’m so pleased that Graham sorted out the ballet and took Jennifer along as it’s too easy to allow the Squatter to be all-consuming for all of us.

On Saturday afternoon, she had a joint birthday party at soft play with two friends from nursery whose birthdays were on Saturday and Sunday. She had a blast with all of her friends. The other two mums (and dads?) arranged almost everything for which we are beyond grateful. The only thing we arranged (and that was optional as one of the mums had offered to sort that out for us as well) was Jennifer’s cake.

Despite having the hacky* cough that is doing the rounds (and that Leo and I succumbed to as of Friday evening), and despite looking after me and the kids for large parts of each day, my Mam made and decorated the first of two birthday cakes for Jennifer (one for her party and one for her birthday) for the fourth year in succession. What’s that expression I referred to in one of my earliest posts about everything changing and everything staying the same?!** Here’s the first cake:

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I didn’t make it for much of the party, but I did make it for 20 minutes or so towards the end, deliberately timed to coincide with the cake-related candle and singing fun. I sat next to my girl and held her hand as everyone in the room sang happy birthday to her. She looked so happy, it made me want to burst with a poignant mixture of happiness and emotion that I was able to be there to see it.

It wasn’t my hacky cough, lack of mobility, seizures or tiredness that prevented me from being at the party longer. It wasn’t even, despite what I joked to some people, my aversion to soft play that made me want to play the brain tumour card (see the Dairy Regulations 2016 in Misremember, Misremember, the Most of September). No, it was simply my overheating problem! When I started to feel my cheeks heat up after cake-cutting and the children had gone back through to the soft play, I felt that I needed to get outside in fresh air as the only alternative as I saw it was to strip off my clothes. I rightly concluded that the latter would be inappropriate so I went outside with my Dad to sit in the car with the door open to feel the cold air on my face! I felt better almost immediately and cooled down even more so once I got back here in the Ice Cube.

Sunny Side Down

Yesterday, to mark four years since I was admitted to hospital for Jennifer’s birth, I was almost admitted to hospital in a last-minute bid to take attention away from the birthday girl. How low can I go? Well, there’s a reason I’m known as Big Mrs Drama Queen…

The twitter version is: I arrived at A&E at about 10am and was home by 3pm, feeling much better, having been diagnosed with a viral infection.

The novella version is that I slept terribly on Saturday night (coughing, overheating more than usual and generally feeling “bleugh”) and woke yesterday morning with a temperature but feeling shivery at the same time. Graham rang the 24-hour radiotherapy helpline. The nurse checked with the doctor on call, who said to keep drinking plenty of fluids and take paracetamol but if anything changes to call back.

Within an hour, Graham rang back as I had my first Doozie since Twozie*** and then 8 or 9 meizures/inbetweeizures within half an hour. They said I should go to A&E and so we called for an ambulance. Thankfully, I didn’t have any more seizure activity after the ambulance got here so they checked me out and it was a much less dramatic trip to A&E compared to the last three times with not even the Blues and Twos this time! I had some blood tests, all coming back fine, and a CT scan that thankfully showed no bleeds and less swelling than previously has been the case.

I was given paracetamol, antibiotics and a litre of fluids by IV pending results and felt better even before the results came back. Although the doctor confirmed that I have a viral infection as expected, he’s prescribed five days of antibiotics out of an abundance of caution. My body apparently might not, with the radiotherapy, be displaying typical symptoms if there is a bacterial infection in there too. I was feeling much better (albeit tired) yesterday evening, back in the Igloo where I belong.

Walking on Sunshine

I slept better last night and feel a million times better this morning. My temperature is back to normal with Plucky Paracetamol’s assistance. Although I feared yesterday that I would be in hospital on her birthday, not only am I home but I was able to be there with Jennifer this morning to sing to her and share in her excitement. I was there to help open her cards and presents before she went to nursery.

So the second half of the radio has barely kicked off but has already been more dramatic than the first half! Big Mrs Drama Queen has struck again but at least it came on the day in between the day of Jennifer’s party and her actual birthday so I don’t think I’ve taken the attention away from our shining star:

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The Purple Glove

After the doctor asked me yesterday about any sensitivities or allergies to drugs, I mentioned the reaction I’d had to the phenytoin given to me by IV (see the photos at the end of this post). When I described the blotchy pattern on my arm, he said, “wow, you had the purple glove, that’s incredibly rare and I’ve never met anyone before who has had it!”. It was on the tip of my tongue to mention the title of this Blog but he seemed impressed enough by an encounter with a purple glove lady, so I didn’t want to overwhelm him!

Just so you all know, if I ever need a secret service (or other) code-name, Purple Glove is my first preference.

rx

*That initially auto-corrected to “haiku cough” – that would be impressive!

**Jennifer went to the cake decoration shop with my Mam to design her own cakes. She’s already given Grandma the heads up that she wants a “101 Dalmatians” cake when she’s five!

***2 January.

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