Friday, 18 December 2015

A special day

Today exactly a year ago on December 18th 2014 we came back to the South of the Netherlands called Limburg, Our own area with our own typical dialect. Closer to our family and freinds again. Tilburg was 1hr 30 min drive. Nevertheless looking back on it I am soooo happy we went there to  start with Meg's rehabilitation. It was a speciel period where I met also many other parents in the same situation. That's something unique for Tilburg, all patients have the same (in gradations) Here in Adelante also other children with other problems are getting therapy,

Last year it was an exciting day, a new start at a new place. The difference with now cannot be bigger. Said the doctor in January 2015, Meg wil not be able to stand. She now is able  to make small standing transfers from bed to wheelchair. She kept suprising everyone. The most progress was in the beginning of this year, Nowadays not that much but stil small things. And many small things make one big thing  ;-)

With the Cliniclowns in Tilburg
ready to drive off for the first time to home in Bunde, February 2nd 2015
March 6th 2015 a sistershugs while standing
in de Ronald McDonaldkindervallei
Second visit by taxi, to her betgrandmother. April 21th. it was the alst time my gandmother was outisde a week later she passed away <3 
In the hospital to remove her PEGsonde  finally, June 18th 
August 18th

From September I was able to take her with me  to my new temporary place in Ulestraten. every weekend

It was an incredible year lots happened. But we stil aren't there where we want to be, Meg was dismissed from the Adelante Valkhorst rehablilitation centre to live at home from September 2015, but due to the fact my house hasn´t got the improvements to Meg needs we are stil (very  very impatiently ) waiting for a house in Bunde to be adjusted. She can stay for the time being at the Valkhorst.  I am now resetting my expectations about living together with Meg to Summer 2016...  Living in Ulestraten isn't the same, I miss my family and friends. Hardly no one comes for a visit and when we go for a walk we don;t meet others whom we know. I hope in Bunde we wil meet others again. Would do so good for Meg, Janna and me I am sure. 

I am wishing you all a wonderful Christmas time and a huge Thank You from the bottom of my heart to all of you whom supported us in any way last 1,5 year. Thanks!

Tuesday, 1 December 2015

A "normal' day?

It has been a long time since I have written something here, I know, loads of things happened. I moved from the McDonaldshouse to a small old peoples house, it is groundleveled only. Temporarily till  I finally can move into a nother rented house in Bunde. Anyway that is not what I wanted to write about today. Meg is doing ok.

Today I want to keep track of my day here.

my agenda is empty for today.... 

6.45h I hear my alarms but cannot get my eyes open, but every 15 minutes a new alarm goes off....

7.30h. I suddenly wake up and rush into Janna's room to wake her up! iecks at 8,15 at latest we need to be in the car. getting dressed etc

8.15h we managed to be in the car, I made her breakfast and lunch she packed her bag, super nervous as today her first paperweek starts. every day she has to make 2 tests.

8.27h. dropping her off at her school, Wishing her succes, but all I get as answer is "i'll fail anyway... " Sigh I send a smal prayer for her, it wil be fine. before driving off I heard my phone: a message from Meg, "Come please, now!! " hihi. texting her back: I am on my way and start driving

8.40h. I have parked the car and go to Meg, She typs on her speaking computer, I need a book called "rondje Nederlands"something from School..  So I check her room, but cannot find any book.

8.50h. walking along Meg's wheelchair to bring her to her class, It is not yet completely safe to let her drive unaccompanied. Sometimes she is distracted and doesn't drive straigh on then...

9.00h. I leave her in her class wishing her 9 fellow classmates, teacher plus assistant a nice day. i asked how the book looks like and since I saw it, I thought to give it another try searching for it. So walked back to Meg's bedroom and found it in her closet. Walked back to the class to give it to her: a huge smile from Meg :) :)  and a happy teacher

9.33h Back in my home in Ulestraten. had to get some fuel for my car

9.42h Armand called for 5 minutes: he finally got in contact with the person whom we are going to lease a wheelchair van for the time being, We were supposed to get it from December 1th onwards. The van "only"needs to be technically checked and tested and then we can pick it up, probably newxt week Wednesday. I am happy we didn't cancel the wheelchair car this weekend... why don't things go as planned? Sigh. I write an update on fb about it as it really does something with me. Realising I need to be upon everything myself.... not relying too much upon others.

10.10h. A call from the PGB office, they want to make an appointment at my place to see and meet Meg etc, also want to check my administration about the care I organised around Meg. etc Wednesday 16th with Meg, sure no problem... sigh

10.15h. Calling with my advisor about PGB if he can also be here at that date and time.

10.32h  Calling back to Armand i thought about the van thing and have some suggestions. as on monay 14th Meg needs to go to her dentist again, Do I have the wheelchaircar from zonneblem then? he said need to check the mail...

10.59h. Calling A, again. again a talk about how to speed it up or why etc.

11.01h. Calling with Diana, the person whom guides me with carethings around Meg and home. No answer.. meanwhile I am sitting behind my pc trying to work at a document about the care I am going to give to Meg when she is with me. time and howlong etc...  didn't write much in there yet.

11.29h. Diana is calling me back, I explained her what I heard from Armand, my unbelieve etc. she wil work on it and call to the car man. The neigbour messaged me if it is possible to dropp of some food for me and Jann. she promissed me to do so yesterday. . . "Sure I am home" madea short talk about the morning,. ok food in the fridge ,Where was I bussy with? Back to the pc.

11.37h. Meg is calling me through whats app???  I descide to answer the call and it is her RT , they are trying to instal a special program into her tablet but need the password for installation. the talk lasted 2 min. 24 sec

11.41h. An unknown number is calling me... nothing new but who wil it be? I wonder. It is the mother of a freind from Janna, if it is ok for her to take Janna along so she can wait there for me to come . I stil didn't get it, I thought oh Janna is finished way earlier as she said she would  ( 11.30) .... duh I completely forgot to drive off on time. Grabbed my jacket and bag and drove off, While driving i was thinking about everything. thinking also what has to be done today and how to get it done... get meg from school, help her with her final things for her talk tomorrow, help janna with learning for her tests... groceries... etc.

12.16h. Diana calling me while we were in the supermarket she had contact and told me what she knew. took 5 min 16 sec

12.29h. She called me again while I just arrived home for 4 min 13 sec. the van wil need to be tested and next week on Wednesday we wil most probably be able to pick it up. for the money we now need to spent on the wheelchaircar this weekend is a negotiation.. solution we wil hear.

12.54h. Back inside from picking up Janna and doing groceries. Sitting on my couch, lunch time now groceries are stored away and after that back to my pc, to hopefully finally get the document finished.

14.07h. Wrote this blogpost, so far, answered other messages from a neigbour whom is coming to visit Meg this eve. I stay home then with janna...

14.16h, After making Janna a cup of tea and telling her to start learning for tomorrow I was going to try to finish my document. fingers crossed. ... only about 45 minutes left before I need to start thinking of driving to meg,

14.45h. A call from the RoinaldmcDonalds kindervalley, they got a letter for me from UWV.  Huge SIGH, I don"t know how often I have to tell them at UWV my adress has changed.... picking it up later today

14.52h, I have added all the nessecairy documents in the envelop ! Yes! that task is done. Now time for some tea. then of to Meg, posting the letter too.

15.06h. hmm shall I open the letter which fell on my doorstep now ar later??  No now... . it is a letter from an organisation (SVB) and they want me to fill in a 3 pages form, sigh... I had done so last year, why again??? I got a few minutes before I really need to drive offf. so I called, explained and was conected to another person but then waited for 5 minutes stil no answer with that person. Had to go, sorry...  took 6 min. jacket , purse an phone and in the car, driving to Houthem posting that important letter on time :)

15.29h , Arriving just in time to park and walk into Meg's school. We first walk to the ronaldmcdonaldhouse  to pik up my wrong delivered letter from UWV. and then to Meg's place.  A cliniclown was there, playing with the younger kids, Meg also had to laugh, but we stil had to work on her speach about Hockey for tomorrow, so we went into her room and she started working on the laptop I took along. By asking questions she got ideas of what to write. Her powerpoint was already finished.but the tex had to be written out as her teacher would read it out loud. worked till 17h on it.