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Re: [IPp] kids with diabetes, coping and grieving process

Best of luck with the pump. I found that it brought many feelings. Raw pain
for all the times we were brave when we felt like throwing the syringes
away. It was the first time there was space to fell the shock of how hard
the previous year had been. I was choked for days after starting pumping,
that I might have gotten lost in all the negatives spoken about pumps by
people not familiar with them. What if I hadn't pushed for it???
My kids have done a lot of grieving work in the last few years as my hubby
died in 2001. I find that their grieving arises a new as they reach an new
age or understanding of what it is to be without a Dad
I have always presumed the same for Diabetes. Grace thought nothing last
year of wetting herself, now it is one of the biggest fears around Diabetes.
The day after going on the pump, Grace (5yrs) transformed. She described it
like different colours inside her.. That these were happy colours and the
old ones were sad and tired. this was less than twenty four hours. Soon
after, at a school party I went to change her basal and as I reached for the
pump, it distracted her from the goodies on teachers table. Grace's eyes
misted up and she said "Mammy, I had forgotten about the pump, I had
forgotten about the pump". Both she and I had a little cry hidden in a hug,
for all those times that celebrations had become fraught as she wanted to
eat the same as the other kids and, if I let her relax ,we paid for it in
mad numbers for days.
We have found that Cranio sacral Osteopathy has been a great help in
adjusting to all the shock and changes. Grace did two Journey for Kids
Workshops (Brandon Bays) and she got lots from that too.
We fill balloons with water and smash them in the garden. The greater the
pile the more of a statement by the kids of how much pain they want to shed.
We have done over a hundred one day!! It is seriously good fun too! They
bounce around and we slam them declaring "I hate smelly.......high sugars".
Even the elements that in theory we have right to be grateful for "We hate
glucometers" and pretend to smash them. We usually end up giggling big time
and the last time we did it Grace fell back into the house chuckling and
reached for the glucometer to check herself laughing, as food was just
cooked. I measure where we are at by the ease in our bodies.
The pump has been such a tool of hope and joy.  Before we were stuck in NPH
and always sort of drowning. The pump was like the sun coming out.
Grace's favourite is to draw a face of how she feels and then scrunch it up.
Slam the ball of paper against the wall and then when it feels right to open
the paper and on the reverse side draw a happy face. Since Diabetes, Grace
then tears up the sheet in tiny pieces. in ways I have felt that there is
more of a truth in this as the "happy face" doesn't do justice by itself to
her new reality. Grace has only done this once since pumping and I could
feel it was about "before".
Adults talk such tripe about kids. I have learnt that I won't let anyone
near them that doesn't have kids themselves and a sound approach to
parenting. Otherwise, often they can't bear a kids pain, so they deny it.
Our pump nurse( very experienced) insisted to me that injections don't
hurt!!! When I was making a case for the pump. After we started and had a
great working relationship, I told her that Grace was horrified that she had
said that and the nurse had the openness to learn from it.
You are the experts in your daughters care and even if no other family found
grief an issue.. your reality is valid in itself. I find the trauma on
parents faces so moving. I feel huge anger at how poorly we are supported in
the trauma of this horrible disease. Even bits that the professionals can't
get cos.... they aren't living with the feeling of guilt.... and then they
can pile it on with the tone of their voice if I ask a question. Ours are
very understaffed so they are fire fighting a lot of the time and a simple
question can seem a bother to them so without thinking they can seem
impatient. In the early days I used put the phone down blown away. Like my
kid needed protecting from me. I grieve all that when I allow the feelings
come up. I found that on Halloween night I had tears briefly as we walked
around trick or treating as there are only three kids under ten in Ireland
on pumps and it felt so sad to think of all those other parents struggling
with that night. For me the list has been the only place that I feel I can
shed the pain of D.
Just the fact that you recognise that it is significant to your daughter
goes very far to addressing the issues.
Wishing you a lovely Christmas and a magical New Year with the pump.
Mum to Grace 5yrs dx 10.03 and pumping Bomba Wanda the bolus fairy 9weeks.
Brian is 9yrs
"Maddness" is being told you are loved and then you voice your soul and it
is dismissed......
----- Original Message -----
From: "Christy Oswald" <email @ redacted>
To: <email @ redacted>
Sent: 18 December 2004 18:08
Subject: [IPp] kids with diabetes, coping and grieving process

> Hi all,
> We are working on getting our seven year old on the pump.  Kiley was
> dx'd in 8/2003 when she was 6, she is now 7 and I am hoping to have her
> on the MiniMed within four weeks.
> Our question:  Do you see your kids grieving over their diagnosis, or
> going through a process as they age?  We are seeing different attempts
> at coping in Kiley, but our social worker keeps insisting that kids
> don't.  I think he's nuts.  We have had a real rough spell.
> Do you find that your kids get different understandings of their disease
> as they grow?  They certainly don't fully understand at the young ages,
> but get to understand more as they get older.  We are looking for ways
> in helping kids cope with all this.  I know that my husband and myself
> both grieve as different stages pass.  Even getting the pump is sort of
> a grieving process, coping that things will not change, hoping for
> improvements and a cure, but knowing that this is what it is and
> threatens our child.  I really believe that our kids go through this
> also, but in their own ways.  Does anyone have any information, books to
> recommend, or your own experiences?  I am so frustrated at the lack of
> it out there, that I would even be very happy to put all the info I can
> get into book form if there isn't one out there - and I certainly
> haven't found it!
> Please email me off list if you would like, or if you have something to
> share with the group feel free.  I am looking for any experiences or
> thoughts that you might have.  I know that I have worked with many
> families over the years in my practice and taught them about the stages
> of grieving, and the cycles that parents of kids with disabilities go
> through.  I think we also do some of that, but I have yet to get anyone
> to admit it.
> I really would appreciate all thoughts and information you may have.
> Thanks!
> Christy
> email @ redacted
>  <http://www.vistaprint.com/vp/gateway.asp?S=5176697856>
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