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Going back to school – a Mother’s view

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school classroom
Back to school

 

Nerves and reassurance

Amy was a bit nervous about going back to school but I wasn’t too worried as our diabetic nurse had reassured me that the office staff at Amy’s junior school were fantastic.
It was the start of the spring term and our life now seemed totally different.
 

Not much sympathy from my workplace

On the first day I couldn’t take her to school although I desperately wanted to, as I work in a preschool, my manager was off sick and the deputy manager was very unsympathetic. I remember clearly the deputy dismissing my worries as if Amy had a cold. She was annoyed that I had requested to leave work for half an hour at lunchtime to give Amy her injection and said “Oh well there’s lots of children there with diabetes, why can’t the office staff just do it.” I was angry and hurt that someone could be so unfeeling. My baby wanted and needed me there as she was frightened and anxious about injecting in a strange place. Kev worked from home and did Amy’s first injection in school as luckily he has a very understanding manager and can work from home if necessary.
 

Day two, a day off thankfully

On the second day I wasn’t working and arranged to meet our diabetes nurse at reception. I remember her explaining everything to the ‘office angels’ although diabetes wasn’t something new to them. One of the admin officers, who I had always been a bit wary of, was so calm and reassuring, she was used to treating diabetics as there were two others in the school already. Amy seemed reassured as she was shown where we could do her injection at lunchtime and she had her own tray to keep all her hypo stuff in. She seemed to be coping quite well and she almost liked the celebrity status: being allowed to jump the queue at lunch; leaving lessons 5 minutes early before lunch; being escorted by a friend for lunch; being allowed to take her toy cat, “Little B”, to every lesson.
 

The ‘office angels’

I remember by the end of the fourth day that I was overwrought; angry because of the unbelievably dismissive attitude of my deputy manager and exhausted as I had to be strong for Amy. The deputy had made a snide comment as I left at lunchtime and when I got to school the office staff were so nice to me that I just burst into floods of tears. The admin officer gave me a big hug which made me feel loads better and she reassured me that I was doing fine and Amy was coping very well as she had a lovely family supporting her. This is why I will always think of them as ‘the office angels’.
 

Winning the postcode lottery

Having talked to other mums of diabetic kids who have told me horror stories about their school’s provision, I realise how lucky Amy was to have developed diabetes whilst at Fair Oak Junior School. The staff at the school helped Amy to cope with a life-changing condition, making sure she was okay, helping with her injections, phoning me if Amy had hypos.
I have nothing but admiration and gratitude for them but especially my ‘office angels’. I will never forget their kindness.

First injection at home, my best friend saved the day

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25th December: Amy, 4 days before being diagnosed,
reads one of her presents whilst wearing another

30th December 2010
Good friends of ours were due to visit on 30th December for some festive fun but I thought Amy would want to cancel as it was the day she left hospital with Type 1 Diabetes. Instead she surprised us all, saying she didn’t want something else ruined over Christmas, so they came.

It was all a bit weird, something akin to the fear we had when we brought home newborn Emilia but without the joy. Our friends turned up and the atmosphere was (very unusually) a little strained as no-one really knew what to say. We were all exhausted but we put a brave face on it and tried to pretend everything was normal. The evening was fine until Amy had to do her Levemir. We went upstairs to her bedroom and then followed a couple of hours of hell.

The last injection Amy had done in hospital had not gone so well, it hurt her. Therefore when she came to inject at 8pm she had that memory vivid in her mind. Mixed with the exhaustion and emotion of the last few days I should have realised there might be trouble, but I was totally unprepared for what followed. Amy had seemed so confident in hospital but when she tried to inject at home she freaked out.

It was heartwrenching as a parent to watch your child psyching herself up to do her injection. She had the needle poised over her leg, taking a deep breath then she would burst into sobs saying she couldn’t do it. Each time I suggested that I could do it but since I hadn’t practised (on her) in hospital, Amy was adamant, “No, you might hurt me!” I started off calm, eventually explaining to Amy that she had to do it or we would have to return to hospital and she didn’t want that. Kev came up after about 20 minutes and he tried to reason with her but by this time she was overwrought and emotions were running high. We cuddled as she sobbed, her face all blotchy and red. Once Amy was calm we tried again to no avail. After nearly an hour I started to loose my patience I’m ashamed to say, but I was exhausted and I knew she had to do this injection. I raised my voice and told Amy that she would have to let me do it. More tears.

Thank goodness my best friend, also called Jane, was there. We went downstairs as we were getting nowhere upstairs. That was the best decision of the night. Jane’s daughter had given Amy a small beanie that resembled Bagpuss and Jane distracted Amy suggesting she thought of a name for him. Then Jane laughed, saying “I know Diabetes is a right bugger. So lets call him Little Bugger, but you best call him Little B for short, especially at school.” That was the first time Amy had laughed since being diagnosed. It was like a breath of fresh air. Jane also said to Amy that she should feel angry and sad and that anytime she wanted to scream and swear about diabetes she could phone Jane and swear to her heart’s content.

Jane, being not so emotionally involved, defused the situation and brought laughter at a much needed time for which I will always be eternally grateful. She thought of using bribery saying “You know, you should be using this to your advantage. You could get anything out of your parents if you do this injection.” Amy smiled and said she would love to go to build a bear. Jane then offered to pay for her to get one and arranged for us to meet up the very next day. Thank you Jane.

Amy managed to do her Levemir injection with Jane and me beside her. What a relief.

Little B went to bed with Amy and to school until she sadly lost him on the school playing fields about 6 months ago. She still misses him.

Amy never has had to phone Jane, to swear down the phone, but she knows the offer is always there. Friends are a pillar of strength in times like this when you just can’t think straight anymore.

Diagnosis – a Mother’s viewpoint

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Jane, at the Kailash Temple, Ellora, India

On the 29th December 2010 Amy’s carefree childhood ended. I had no idea how a couple of days in late December would change our daughter Amy’s life forever and that of our family.

Amy and I were looking forward to a girlie shopping trip to Eastleigh on the 28th December to spend some of her Christmas money while her sister Emilia and her Dad went to watch footy.

But it all went wrong.

I reminded Amy to visit the toilet before we left (as she was quite often caught short) and she had a drink. We set off but within minutes Amy was saying she was thirsty and I remember being annoyed as she had already had a drink, so I dismissed her plea, not knowing this was a classic symptom of type 1 diabetes. As soon as we got there Amy then said she needed the loo, I couldn’t believe it, she’d only just been at home, how could she possibly need to go again? Little did I know this is another sign of diabetes. We dashed into McDonalds and I remember Amy had gone a very grey colour, unlike her.

Now when I look back I feel guilty that I was mean to her when none of it was her fault.

I decided to abandon our shopping as Amy wasn’t in the mood. She was still complaining of thirst and I was astounded when she downed a whole fruit juice in one go as Amy had never really drank vast quantities before. As soon as we got home Amy started drinking pint after pint of squash, interspersed with incessant trips to the loo.

Alarm bells were going off in my head.

I remembered a conversation I’d had with my best friend about her aunt who is diabetic but I pushed that diagnosis to the back of my mind, it wasn’t going to happen to my child. Instead I assumed it was a bad urine infection and knew I would contact the doctor in the morning.

The next morning I woke early and got an appointment for 10 o’clock.

I was still calm at this point. I recall the doctor testing her urine which had ketones in it (not that I knew what they were) then he wanted to do a fingerprick test. He produced a new glucose meter to test Amy’s blood – little did we know this machine would be so vital to Amy’s health for years to come. I was still in denial at this point as the doctor mentioned it could be diabetes and we would have to go to hospital to have another test. Niaively I asked him if we could postpone it so Amy could go to her friend’s party that afternoon. (I cringe when I think about it now.) The doctor promised he would ask the hospital, so Amy and I visited her friend to deliver her present in case she didn’t make the party.

By the time we returned, the doctor had already phoned to say we must go to the hospital at 3p.m. I still didn’t understand the significance of this. I suggested to Amy she wore a party top as although she’d miss the cinema, she might be back in time to go for the meal. How stupid was I?

As we arrived at Winchester hospital I remembered feeling very surreal, was this really happening? We entered the ward through Sophie’s Place, a waiting area for families set up by Sophie’s Appeal. I had had the pleasure of teaching little Sophie who sadly died, aged 6, after a brave fight. Seeing her smiling face on the wall was a lifesaver for me as it helped me put Amy’s condition into perspective. Diabetes was terrible but she was not going to die from it like poor Sophie. This one thought helped me to get through the traumatic hours that lay ahead.

The next few hours were a bit of a blur as the news sank in. The staff were fantastic. I remember going into a sideroom with the diabetic nurse, after Amy had another urine and
finger prick test, to be told she had Type 1 Diabetes. Kev and Emilia broke down into tears but Amy who was sat on my lap, kept asking ”Does that mean it’s forever?” as she couldn’t quite comprehend it all. I was numb but kept thinking she’s not going to die.

The nurses found her some left over Xmas presents to make up for the fact that she had missed her party but that seemed a lifetime ago. The really harrowing ordeal for me was when they put a canula in her hand to take blood. She was probably dehydrated which would have made it more difficult. Amy went berserk, she hated needles, she still does. At this point we were all in tears including the diabetic nurse.

The next hurdle was dinner as Amy had to inject before eating. Somehow this didn’t upset her as much as I thought it would, I guess the canula had been far worse. I remember Amy practising with the DSN on a cushion then I was so proud of her when she injected in her leg for the first time.

Amy devoured her nuggets and Smilies, she was starving! I then realised I was famished too. Kev and Emilia left to get Amy and me some overnight things. We were so totally unprepared, I had no idea we would spend the night in hospital. Luckily Kev also brought back some food for me, which I devoured, I was so hungry.

Amy and I were lucky enough to get a side room which was a godsend. Neither of us got much sleep. When everyone else had gone Amy sobbed ”Is this really for life Mummy?”.What an awful question to answer. Needless to say she cried herself to sleep.