2013

Dear all,
I am still here, more active in the french original version of this website. Feel free to message and share what you need to, I shall reply to all your messages.

Attention!

For the new visitors: please read the site from the beginning, important messages are there.
And spring is arriving!

Merry Christmas!

Against all odds I wish you a nice Christmas! The celebration has a different meaning when you live it with an ill child. Non-essentials vanish, only the essential remains: Love.

Serenity

A serene image, this morning, to give you some peace

A gift

Those beautiful images to cheer you up!

Summer

It's summer, maybe you are with your sick child to hospital or at home, trying to distract him or to pass the time as best as possible. Perhaps you think of those who enjoy the beach or play the tourists elsewhere, while your only priority is to care for your child.
Can you still enjoy the sun caressing your face during a trip outdoors? Recharge your batteries! Nothing is better than
summer for it, a walk by the lake, or a glass on a terrace and all is better.
I always think of you, parents, even if I do not publish much in this blog, and I await your comments and participation!

The "Café des aidants" , Caregivers' cafe

This morning I went to the "Café des aidants" which is held once a month in Geneva. It provides support to those caring primarily for a relative, spouse or parent . As caregiver to a child, you are more than welcome to attend these meetings should you happen to live nearby. For those who don't, this blog is for them - a place where parents supporting their children can share their thoughts and feelings. ... Such sharing is good, gives strength to those involved and assures them that they are not alone in their task.

Send me a message via the "comments" if you need more information.

Spring

After that long winter I'm thinking of you who are struggling with your child. I know how a sun ray can cheer you up! Those crocus are for you:

Fear

Thanks to "anonymous" for opening the gap! In fact fear is present, it is undeniable, and it is not easy to manage. You should know that this is normal. If we did not feel anxiety about our ill children, that would not be normal. There is no miraculous solution to cope with this emotion. My way of handling it can perhaps help you. When anxiety shows up, I stop and I feel what is happening in me and I think: it is normal, just let it be. Sometimes I talk to it and say: "I know you, you just come to make my life more complicated. You have the right to do so, it's part of the " game ", but I won't let you any place, it is just for a moment and then you'll leave me, and let me continue my path".
I can tell you that in any case it works for me ... And it works also for the moments of depression or discouragement.

I know this site has visitors, but no one dares participate in the exchange, and this makes me a little sad…
This site is for you, there is no risk, except for the relief of knowing you are listened to. No hesitation, click on "comments"...

To delegate

Do you have a problem delegating? Don't assume that you are the only one who knows what is best for your child.
It is not easy, but it is important. If you take care of everything there is
no room for being just mother, or father, and that is what your child needs
most!
As a trained nurse, I wanted to do everything for my son, including
antibiotic perfusions and other technical care like the maintenance of the
port-a-cath. I understood quite late that this was a mistake. It caused our relationship to become unsettled
at a sensitive time when he was in need of independence.
Have confidence, the professionals are there to allow you to simply give
love to your child.

School

ls your child able to attend regular classes? If not, how to you deal with his/her education at home? Are you able to afford private lessons on your own or with help from others? Do you have a problem with accepting financial assistance? What arrangements have you been able to make if you work outside the home, or need to absent your self for a short period of time to attend appointments, or go to fitness classes, shopping, etc.
There are many questions that need to be considered. .. Perhaps your solutions will be a help to others parents in your position! Share with us!

Finances

A child's prolonged illness can take a toll on a family's budget. Have you had to curtail your work hours and cut corners to made do? Is financial aid available to you in your area? Tell us how you manage..

The medical professionals

How do you get along with your child's doctors? Are you kept informed of his/her progress as much as you would like? Do you sometimes feel that they know nothing, or that they are not telling you everything? Do you believe that it's important for your child to have an attachment to and trust in the doctors as well as for you, the parents?

How do you regenerate?

Of course, we realize that in order to keep going, it's important for the parents of a sick child to take care of themselves as well. You need time to yourself, to be active, to indulge in a favourite activity. For myself, I kept on ballroom dancing and it was a blessing on many days.
How do you recharge your batteries?

Christmas

How do you celebrate Christmas, Easter, etc. when you child is in the hospital?
How do you cope with those joyful celebrations that your child cannot attend and enjoy?

Teen-ager

Your child is now a teenager, still needs you, but at the same time, wishes you would leave him alone. ! He is often aggressive and and you take it very badly. You feel guilty. You feel you do too much, or not enough … Do you recognize these feelings?

Couple

How do you and your spouse handle your child's illness? Do you feel supported by your spouse or abandoned? Who helps you if you are a single parent?

Siblings

You have other children who need you. How do you manage your time? Do you feel guilty because you give more time to your ill child than to his brothers and sisters? How do you reconcile with this?

Alone

One of the most difficult things for me was to come home after having been with my son at the hospital, and find myself alone with this load of anguish, sadness, feeling demoralized. What to do about that? Phone your friends, yes, but sometimes you are afraid it is too much for them as well and you remain with these feelings in your heart.
In this blog you may say anything you like, talk to me like an imaginary friend, write poems or just put words together without needing a follow-up, as long as the burden is shared.