Wednesday, February 16, 2011

A sample of what you can find in the anthology

Jasiek

He was very brave at the hospital.
I was worried because it was the first time he had been sleeping away from home, without favourite toys around his bed and lacking a daily routine.
I left him my cell phone to make him feel more at ease and to give him an opportunity to call me, just in case.
The first message came at 6 o’clock – I am bored!
Then, around 9, about five more, with the same information.
At noon there was a phone call:
- They will make me THE THING they do to pregnant women! – he whispered scarily.
- THE THING meaning WHAT?
- Come on, ultrasound  - whispering again. But I am not pregnant, RIGHT? – this time he was hysterical.
We arrived quickly to calm down the poor thing. Ultrasound was made. Jasiek is definitely not pregnant :-)

Sacks of gold

We’ve been talking about values recently.
That they are not necessarily measurable in money.
That one could have nothing and would be fabulously rich.
That there is a kind of wealth that make people noble, and there is wealth that doesn’t necessarily cause it.
And we’ve been also talking about feelings – which ones are worth keeping, and which ones we should get rid of quickly.
It all started with … sacks of gold and precious stones.
Because Karol found a beautiful rock crystal and was wondering if it was worth more than a diamond. And he asked me if I was unhappy because of not owning any diamonds.
- Or a sack of gold??
- Or any other treasure?? Because he wished to have it and he wished me to have one as well.
- Well the truth is I do not feel bad at all not having any diamonds or gold!
- What is more, probably, I wouldn’t like to have them at all, because it would make me feel anxious about losing them or being robbed!
- And I’ve already got six treasures at home! - And the fact that I have them is much more important than gold!
So I told Karol straight:
- Boy, I would never exchange you for any sack of gold!
- And for the diamonds??
- Absolutely not!
- And for all the treasures of the world??
- Not at all, it is a dead cert!
- Ok mum, now you sound reasonable!
He heaved a sigh of relief, because he calculated that maybe I wouln’t be attracted by a sack of gold but all the treasures of the world could have been an irresistible temptation :-)

A Present

Karol (9) was to choose a present during our trip to the city. So we took the boys and went to the shopping centre.
We dug through some shops, I really had enough in Tesco, so I shyly suggested to choose some books maybe – there was a vast selection, not too expensive, and I don’t care so much about spending money on books.
He went through the shelves…
And asked if this could be a book for ten zlotys.
I felt nice.
Firstly, he wanted the book!
Secondly, it was cheap.
Nevertheless, I peeked in the trolley:
“100 suggestions for a good sex”.
I pooped out.

Druga-mama, one of the authors of our anthology.

Tuesday, February 15, 2011

What is it and why?

“No frills motherhood” is a project in which popular Polish mothering bloggers take part. We all write about it in different ways: that it is so hard sometimes that you want to scream, that children get sick, that they give us a hard time. We describe our hesitations and choices we make, dilemmas between our need for fulfillment and need to be with kids and still we are happy and we cannot imagine our lives without them. Some of our children are small and some are bigger, what gives a broader view on the motherhood from different perspectives.

The invited girls choose a note (notes) from their blogs and I will join them together in PDF file. Our virtual anthology is being distributed via the internet.

That way we would like to help little Mikołaj who was born in 2010 and is seriously ill, suffering from 1 SMA (Spinal Muscular Atrophy). More on Mikołaj on his blog (in Polish).

We want to help Mikołaj and we strongly encourage you to do the same. The anthology is being produced, it will soon be available on the market. We will publish the information on this blog, stay tuned.
Share earnings of “No frills motherhood” will be donated to Mikołaj.

Help for 7-month old Mikołaj, SMA sufferer

Mikołaj, our seven-month-old son suffers from type 1 SMA, Spinal Muscular Atrophy, also known as Werdnig-Hoffman disease.

(Learn more about Mikołaj’s condition here)

After hearing the diagnosis, we were left alone by the doctor, who directed us to a hospice explaining how things would only get worse for our son. At this time, there is no cure for SMA but there is treatment.
At just 7 months old, Mikołaj has already gone through a percutaneous endoscopic gastrostomy (PEG) placement (feeding tube) through which he is now fed, and tracheotomy because his breathing requires the constant support of a respirator.
Right now Mikołaj is staying in the Intensive Care Unit of the Upper Silesian Child Health Centre in Katowice. However, he has qualified to be ventilated at home, with his family.
Unfortunately, the price of Mikołaj’s return home is steep. To meet our infant son’s needs, we must buy our own life-support equipment, including a respirator and a power wheelchair so Mikołaj can enjoy some small freedom of movement.
It is also essential that Mikołaj receive rehabilitation, his only hope of slowing the progression of this terrible disease and prolonging his life. Polish National Health Service does not refund rehabilitation of children suffering from SMA.
If you are reading this, we are asking for your help. Not for ourselves, but for Mikołaj. We do appreciate prayers and messages of support. But we also need financial assistance to purchase the life-supporting equipment and rehab our son needs, and deserves. We would also gratefully accept donations of any of devices listed below. Any help will make the life of our brave boy easier and longer.

Essential devices:
1. Respirator – fully reimbursed by National Health Service. Additional battery has to be purchased.
1. Power Wheelchair - about PLN18 000, NHS gives only PLN 1 800
2. Capnograph – about PLN40 000
3. Mechanical insufflator-exsufflator – about PLN 22 000
4. Oxygen concentrator – about PLN 2 600
5. Power generator, static converter (in case of electricity problems) - about PLN 2 600
6. Special wheelchair -
7. Rehabilitation sack - about PLN350
8. Ambu about PLN200
9. Rehabilitation bed - about PLN900
10. Anti -bedsore mattress - about PLN 1000
11. Rehabilitation five times a week – about PLN 2000 monthly

Mikołaj has been registered in the Foundation. Once we receive his account number, all donations can be made through the foundation and will be tax deductible. Until then, this is the account number opened only for Mikołaj’s needs:

Fundacja Dzieciom "Zdążyć z Pomocą"
PKOP PL PW 41 1240 1037 1111 0010 1321 9362
transfer title: 13401 Kamiński Mikołaj - darowizna na pomoc i ochronę zdrowia (donation for help and heath protection)
We will show detailed settlements/invoices to any individual or company willing to help, including placing corporate names on the devices bought thanks to your contribution.
Equally vital: We need a recommendation for a pediatrician with broad knowledge on SMA, who would agree to be Mikołaj’s attending physician (we live in Będzin), with physiotherapists of cranio-sacral therapy and Speech-Language Pathologists.
At your request we will send you:
1. A medical certificate on disability
2. A diagnosis made by the Genetics Department
Please contact us with questions or physician recommendations. We will be extremely grateful for any help given to our Son, Mikołaj.
Phone: 0048667012664
email: nea.ania@interia.pl

Sincerely,
Mum Ania, Dad Marcin & Mikołaj