Last time I wrote in here was just after S.’s cystoscopy .
Then she had a UTI.
Its been 3,5 months since.
What was happening during that time?
One step forward:
After full cours of antibiotics, S. UTI cleared out and what’s more important- E coli was gone. We were fighting it for a full year and couldnt get rid of it, and somehow just after one week of Keflex it was gone- for last 2,5 months.
Its kind of a mystery how – as results that came showed that S. urine sample contained two different types of bacterias and each of them were resistant to oposite antibiotics.
Anyway- first time -after 12 months she stayed bacteria free and dry in between catheterizations.
And thats our goal at the moment (to achieve social cleaningness).
Two steps backwards:
S. is shy. Alwasy was and finding it hard to open to new situations and people. Fair enough.
But since Xmas school break was over, S. was very nervous about going to school. Every morning she kept saying “please don’t leave me, I’m scared.”
And again in the evening when she was going to sleep. In our house, it’s S.’s dad who is getting her to sleep. For last 2.5 years. So it’s nothing new. But for last two weeks she keep saying and crying she wants me. And get really upset as I couldn’t come cos I was getting her little brother to sleep at the same time. We thought it’s jealousy. But still I tried get him to sleep as fast as I could so could come over to her.
On Saturdays S. is going to musical and theatre class. She loves it and yet, for first half an hour of it she’s either hanging onto me, or standing there with tears in eyes and won’t join others . I nearly gave up bringing her there, starting to think I want it more than she does, but she keep saying she love dancing and singing. One of the Saturdays after New Year she spent 25 minutes holding me tight and then when I managed to leave, (bathroom excuse) she just stood there for next 20 minutes and after class she asked me why I didn’t came back from bathroom?
Later on she was going for class birthday party and was collected by one of her pals. She wouldn’t go into car. Keep saying she scared go without me. I explained to her I can’t go without her brother and there is no space for him in the car so I can’t go but I be home when she’s back and she will have a great time with all her classmates and friends. After 15 minutes of repeating myself I got annoyed and told her that she can go or stay. She doesn’t have to go. She looked really sad and truly scared she have to go without me, my heart was breaking. I said “S. I know you are nervous to go there cos it’s a new place and you are bit scared of that. But don’t let that fear take over, don’t let it stop you from having fun”… and I bribe her with a lollipop (at this stage I run out of ideas cos party was already started and I felt bad we are holding other people to go there). In tears but she went there.
Later on that day I spoke with S. and she told me why is she so scared. I kept asking her what is she scared of, she’s safe, I’m always here. I suggested the word “nervous”. She agrees it’s better word. And she said she’s very nervous when I’m not around. I said I’m always with you, if not in person, then in your heart. She said “you aren’t”
“you weren’t beside me when I woke up in hospital, and out promised you will and I was scared “.
I opened my eyes wide when I heard that.
It was like that. I brought her to theater and hold her hand while she went under GA, and I promised ill be there when she wake up. I said that cos that’s the way it went when we were in UK. That’s the only time I did it (brought her to theathre for procedure).
It’s scary how much that “small” situation affects her.
After hearing that all the puzzles came into place. S.had cystoscopy just before Christmas and ever since she was so nervous.. I explained to her that I wanted to be there when she wake up but I couldn’t – thats the hospital rule, I had to wait for her to come back in day ward. I keep saying to Sophie I’m always there for her and spend all the time with her and yet she’s all nervous. I realized I’m clueless. I don’t know what to do to make her feel safe again.
Other morning S. classmate dad was collecting her to drop school. She was going with them few times before (they live around the corner and offered to help me). That day she wouldnt go into car. I had to drive with them. It was already 9,so didn’t want other girl to be late because of us so I run in to grab boots, left S.brother with 81y.o grandma, and drive with them. But it got even worse in school. She wouldn’t let me go. SNA talk to her and we tried to reason with her :mum will be back, and you don’t have to go to class just yet, you can stay with C. outside, and you go put on the wall new poster-that two of us made yesterday – in the bathroom.. None of it worked. Eventually SNA just just go and pulled S. away and told me to go.
As i was walking or I should say running away, I heard S. screaming “mammy please don’t leave me”.
For last 3 months, nearly every morning in school, I was trying to calm her and reason for half an hour. No luck. I keep telling she’s safe and she’s here with her friends and C. is there to help her, and she doesn’t have to go to class yet, she can stay with C.. I told her we all have jobs to do, daddy has to go to work, she’s in school and I’m going home to mind nanny and her brother and make a dinner. And we will make something nice when she’s back home,(baking some cupcakes, doing art work , etc)… But she still hold on tight to my arm and keep saying she’s nervous and wanna go home.
In the end , most times I did something I tried to avoid, that is pulling her small fingers of my jacket and run away while C. hold her.. while she was screaming and kicking.. Its bad.
Her sadness is overwhelming for her, and for me .
I did the reaserch and found out that her fear of being abandoned is SEPARATION ANXIETY – totally understandable given the recent procedures etc.
But how do I cope with it?
Every day life is affected by it, and long planned hospital procedures as well, for example Urodynamic.
I was asking for it for last 3 years and first S. was to young too have it done (it was pointless before shes in school age) and there was no urologist in our hospital.
Finally we got the date….but I didnt happen.
S. got scared and wouldn’t let me or her dad do the catheter. Never mind the urodynamic.
She had a panic attack. She completely blocked. It didn’t help that two nurses keep talking at her(while we tried calm her)and one of them tried pull her legs apart.
We had to leave the hospital. I felt so bad for S. that i just wanted to take her back home, cuddle her and make all these anxiety go away. If I only could…
On the way home S. said to dad:
“dad, im sorry we didn’t do the catheter, i was very nervous. but the lady ( nurse) said that maybe next time i could go sleep for it”
so he asked- would you prefer that?
“yeah, so I cant feel it”
And again- she would have to go through the stress with being admitted to hospital and be fasting (last time it got her very upset) and again- she would wake up without me beside her.
We got to meet with Psychologist but S.was very upsat and wouldnt talk about it, wouldn’t try to do some breating / relaxing exercises.
There is a lot more to this story and it does have an ending, an I suppose, satisfactory one, if not a completely happy one. Its long and important and it deserves its own story. Right now though we are still going through this every day and I wanted to help and make aware others who are having the same issues. So, to be continued………..
In the meantime heres some interesting and helpful information explaining separation anxiety, recognising it and ideas to help find light at the end of the tunnel.
Anxiety – causes
Anxiety can happen especially during periods of change, when a child has fears or worries. The child needs to know what is going to happen as the unexpected can cause anxiety so talking through what will happen is vital.
Separation Anxiety – top tip
Reassurance, calm and relaxed works when your child facing a new situation
When children are in situations (such as hospitals) and are under stress (such as illness or pain), they seek the safety, comfort, and protection of their parents. Since anxiety can worsen pain, staying with a child as much as possible can reduce the pain.
A child with severe separation anxiety may have any of the following:
Excessive distress when separated from the primary caregiver
Reluctance to go to school or other places because of fear of separation
Reluctance to go to sleep without the primary caregiver nearby
Repeated physical complaints
Worry about losing, or harm coming to the primary caregiver
Another helpful link:
How can I reduce my child’s anxiety after a hospital stay?
After your child is discharged from hospital:
Maintain normal rules, limits, and expectations. It may take time for your child to return to regular routines and schedules. However, it is most helpful for you to practice the same parenting style, as much as possible, as you did before your child’s illness, injury, or being in the hospital.
- Help your child to process the healthcare experience. Some play, language, or art with themes (healthcare, anger, frustration, separation, etc.) will help him make sense of his injury, illness, or hospitalization. For example, play “hospital” or “doctor” with your child, have him talk about his hospital experience, read stories with him about the hospital, draw pictures or write notes to the staff at the hospital. Children, particularly young children, often need to duplicate these experiences repeatedly for several weeks. If you need ideas about activities that will help your child while in the hospital or after going home, contact a child life specialist.
- Be patient. Although it may take a lot of patience, it is important to be as supportive of your child as possible. Try to not punish your child if you notice regressive behavior or if your child needs extra time and attention from you. Being patient with his behavior changes will help him return to normal as soon as possible.
- Reassure your child that he will only have to go to the hospital when he is ill or injured. After returning home, many children worry that they may suddenly be taken back to the hospital without warning. This is because they have a hard time understanding that illness, injury, and healthcare is not a punishment. Talk with him about why people go to the hospital and reassure him that people are not injured or taken to the hospital because of “bad” behavior.
And last link:
Signs & Symptoms
(Note: very young children may be unable to identify specific fear thoughts):
What if something bad happens to mom or dad?
What if I get lost?
What if grandma doesn’t pick me up after school?
What if I get kidnapped?
What if I get sick and mom isn’t there to help me?
General aches and pains
Shortness of breath
Avoiding participating in new activities or going places without a parent
Refusal to sleep alone
Asking a parent to be present or available
Crying or tantrumming
Cannot be alone in a room
Common Situations or Affected Areas
Refusing to attend school field trips
Inability to make and maintain friendships due to fear of being away from parents
Lack of independence in a variety of domains (e.g. sleeping, playing, socializing, going away to college, etc.)
Increased dependence among family members
On this website you can also find a helpful videos