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.








Monday, 7 September 2015

School

Is it wednesday already?? I wanted to write about our weekend of 3,4 and 5 July. We rented again that wheelchair bus. Which gave me a wonderfull feeling of being free to go whenever I wanted to go with Meg too. 

On Friday Janna was having her final revue, as she is going to leave elementary school, passing on to a new school next year. Her teacher and classmates practiced a lot all not telling anyone about the show. Parents (including me) helped to sew their costumes made the decor. Janna wanted Meg also to be there. Meg was also on the same school but never went back there after the accident. So we arrived there and Janna and her classmates were already  awaitingus in a frame, they were a living artwork. As art was also this schoolyears theme. 


After the photoshoot was done Janna came to greet us. She looked so beautyfull! a real teenager to be. The visiters had to take their places and for Meg was a special place reserved. Janna was nervous and we al anxious to see the show. 
 
They made their entrance and the show was a great one. Meg enjoyed it, but when the group started playing she started typing too... " what about my final show last year? " She cried  a lot, realising she missed that out. I was "happy" to see this happening, nevertheless I was crying myself too. After the show we all went outside and there Meg wanted to walk towards a bench she knew from her schoollife. the power she showed!! amazing, Ofcourse we had to hold her but she had to move her legs herself and she did !! Powergirl! 



  




Wednesday, 17 June 2015

Somethings are.....

just no coincidence. Or? You know right from the after the accident. I truely believed things really happen for a reason. Too many things to call it coincidence like:

The driver was twice as old as Meg was, came from a place we had to go for rehabilitation. He studied neurology, etc. The emergency docter was named "drs Engel " = angel in Dutch. A phone number of a paragnost, which I got from a lady, I never saw her back, after she gave me a card with the number including money to me... was it again an angel?  That visit gave me sttrength and hope. I can go on for a long time, even last week is it coincidence or not?

Since Monday June 8th 2015 Meg is going back to school again. Finally!! We  have been asking for it since March, She needs contact with same aged chidren and I was quirious to know if she was stil able to do maths or learn things like English etc. So on this Monday she went to this special Mythyl school on the same grounds as her clinic. Last year the accident was on Friday so she missed last weeks before the summervacation started. This year, exactly a year, later she is going back to school until the summervacation starts again. Continuing as if she never stopped at school... a sabbatical year. a closed circle, life goes on again.

We stil need to see how she wil do in class... can she stay focussed? Can she learn new things in her short term memory? She is now 2 hrs per day in the class with now 10 children aged 12-15 yrs, most of themb have epilepsy and look like 'normal' kids. Don' get me wrong here when I use the term 'normal' kids. For us we never had much/ close contact  or experience with children in wheelchairs  and their daily life with therapist, forms that need to be filled and every organisation asking for all medical infromation. (Where is her privacy???) We have fallen in a new small world a different society. The world of the disabled. And I never knew there are so many different disabilities but I am getting used to it. Also when going out with Meg, the behaviour of people is so (hopefully not on purpose)  rude. They ignore to react to their children when they say something about Meg out loud ... as if we cannot hear. Some think Meg is stupid, but she is not, she just cannot talk with her voice, Therefor she has the speaking computer. I always try to involve Meg in the talk.

The rehabilitation/ school area, is pretty "Safe" I mean people are used to see kids in wheelchairs, wearing braces, have spasm, etc. Harder is being in the "normal" places like our village , ( I never really realised how bad some pavements are) And crossing the railways? Not possible at the station... there are only stairs, so we need to walk to a road crossing section....

Last weekend we rented a wheelchaircar, it was a great feeling, this "freedom", in transport. Me driving her myself , not a stranger. I took her home on Friday as we had a surpriseparty organised for Armand 's 50th Birthday. He slept the night before his birthday at the hospital, (due to kidneypains) but he descided he was good enoug to have a party.  Janna baked him a special minion cake.

I took Meg back to the clinic to sleep. Even being at home confronting things happen. Simple thing like going into the garden.... not possible for Meg. We have steps and heightlevels in our garden. She didn't cry about it, but I saw on her face she forgot she cannot go :(

Sunday June 14th I was there again in the morning to pick her up. A delegation of the Hockey club she is stil a member of, came to visit her/ us. She smiled from ear to ear when she got a training vest with her name and club name on it. Plus training trousers too. No need to tell she wanted to wear them today ;-) Thank you!



After the summerstop we wil go and see a hockey game, for now the season has ended and I think it is also very confronting for her, plus transport is stil an issue.

In the afternoon we went to a performance of Janna's flamengo. She started in September and this was a show from all felmengo groups of her teacher. Amazing to see. Felt like being in Spain.

Janna  with a stunning hairstyle and dress in the middle. Proud <3

The gitar player , Rezar, said before he started playing an intro it was specially dedicated to Meg as he heard lots about her from his pupil Lucas. He played a special song called, "Volver" means coming back. Touching song and gesture, Thanks!
After dinner I took Meg back to her room in the clininc.. I was super tired. On Monday I slept 4 hours at a stretch between 11-15h, I really needed it, It wil be a calm week for me that I do know, no wild plans, hihihi.

Thursday June 18th we wil need to go to the hospital for a day. Finally Meg's PEG sonde is going to be removed. YES!! We waited also long for this to be removed. It wil be a simple small surgery, they say.... fingers crossed xxx. Again a little step to "like before but different"

We are now waiting for the insurance to give greenlight for a wheelchair van... and when they say Yes it wil most probably take another 3-4 months before we can actually drive in it....  :(

Meanwhil I lwant to make plans for the summertime, but so many things stil needs to be organised first,, sigh..  wel one day after another...




Friday, 12 June 2015

A year ago the revieuw of my youngest sister Debbie

Posted by Debbie on facebook June 7th in Dutch, below English
Zoals mijn andere twee zussen ook al schreven, sommige dingen blijven je bij. Wij waren spaghetti aan het eten in de tuin, toen we een ambulance hoorden. Tobias vroeg: Komt die hier langs? Waarop ik zei: Nee, gelukkig niet. Een paar uur later werd ik gebeld door Selina. Ook dat vergeet ik niet, ik kon niks meer terugzeggen tegen haar na het nieuws. Dit kon toch niet zo zijn? 
Die avond nog extra naar mijn kinderen gaan kijken. Ik was ongeveer 36 weken zwanger. Die eerste paar weken... Ik geloofde dat Meg en Lodewijk, (waar ik zwanger van was) wellicht contact met elkaar hadden. Allebei deels wel en deels niet op deze wereld. Lodewijk Leonard Alexis. Lodewijk, naar 3 (of eigenlijk 4) van mijn en Ingmar zijn opa's (Louis, Aloyisius). Leonard: Ik bleef denken aan een leeuw. Als sterrebeeld? Iets anders? Leonard, het hart van een leeuw. Alexander vonden we altijd al een mooie naam. De betekenis van Alexander is redder van mannen (saviour of men, als ik het goed heb).
Alexis betekent Savirour of mankind, redder van de mensheid. Ook van Meg.
Wellicht wat vreemd, maar ik heb altijd gedacht (nog steeds) dat namen kracht bezitten. Een naam past soms bij iemand, het zegt iets over hoe iemand is. Over zijn daden, karakter. Ik hoopte dat Lodewijk Meg de weg terug zou wijzen. Zoiets.
Als ik het zo schrijf klinkt het wat zweverig, maar waarom ook niet?
Zelf heb ik niet meer zoveel met religie van doen, maar ik geloof wel in krachten van de geest, van de natuur. Bij de ziekenzalving aan Meg haar bed onweerde het. Dat gaf mij rillingen - dat was wat bij mij paste. Twee "geloven/overtuigingen" die Meg kracht en genezing toewensten.
Hetzelfde tijdens de communie van mijn neefje, op zondag 8 juni 2 dagen na het ongeluk. Toen iedereen in de kerk zat barstte er een hevig onweer met plensbuien los, daar liep ik doorheen naar het huis van mijn zus om te kijken of ik daar nog kon helpen. Toen ik terug kwam bij het plein/de kerk, was het onweer voorbij en scheen de zon weer stralend. En de communicantjes kwamen naar buiten.


the church tower bathing in sunlight , the rest dark
the divided sky....
Een jaar later. Gisteren aten we weer buiten. Geen spaghetti. Ik moest denken aan een jaar geleden. Hoe snel kan iets veranderen, en hoe onbenullig zijn zaken als uiterlijk en bezit.
Mijn familie is gegroeid (ik bedoel hier niet mijn gezin mee wink-emoticon ). Het leven is veranderd, vooral voor mijn zussen en mijn ouders. Voor mij veranderde het ook, maar anders. Omdat ik pas net in Bunde woonde (29 Maart waren we verhuisd) was ik nog niet gewend aan onregelmatige familiebezoekjes naar hun en van hun.
Eigenlijk begon de woelige rit al eerder, november 2013. Ik moe van het zwanger zijn, bij mijn zussen/ouders waren er rond die tijd ook al zaken die niet soepel liepen als ik het goed heb. Na het ongeluk met Meg waren er meer hobbels, de soap in de achtbaan ging door. Soap omdat er altijd wel iets gebeurt, en achtbaan omdat het een nog niet over is of het ander dient zich weer aan.
Zo ook bij mijn zussen, het ene obstakel is genomen of het ander dient zich weer aan. Over mijn ouders heb ik ook mijn zorgen gehad. Hun leven is ook ontzettend veranderd, dat draait nu om Meg. Ik ben blij dat mijn moeder nog zo veel voor Meg kan doen, voor haar kan zorgen, en dat mijn zussen ook zoveel voor Janna kunnen doen.
Het heeft zo moeten zijn. Er zijn zoveel toevalligheden... zijn die echt toevallig? Als ik niet hier had gewoond, was de band tussen mij en mijn zussen/ouders erg anders geweest omdat hier in Limburg de lasten gedragen worden. Den Haag is ver weg. Maar ook andere zaken, teveel om op te noemen.
Ik ben blij dat Meg alweer zo ver gekomen is, maar ik hoop ook dat dit niet het eindpunt is. Er is sinds Leypark zo hard aan haar revalidatie gewerkt, maar het lijkt nu wat rustiger. Omdat ze al wat meer kan? Of om het "zwarte gat" na de coma, zoals Kim een tijd terug postte.
Voor Meg, maar ook voor Janna, hoop ik dat ze een mooie toekomst (te beginnen met de pubertijd) tegenmoet gaan, niet gehinderd of emotioneel onherstelbaar beschadigd door dit gebeuren.
Voor mezelf hoop ik mijn hart of overtuigingen te kunnen blijven volgen, en dat is dat werk ondergeschikt is aan gezin, aan leven. Dat ik bewust nadenk over de (ecologische) impact van ons leven, onze manier van leven, en dat probeer te wijzigen. Niet alleen onze eigen gezondheid is belangrijk, ook die van de aarde om ons heen. Dat aandacht, tijd, belangrijker is dan bezit.
Dat familie zeer belangrijk is. Soms kunnen we niet mét elkaar, maar we kunnen zeker niet zónder elkaar.
As my sisters have written, some little things are remembered. We were having spaghetti in the garden, when we heard an ambulance.
Tobias asked: Does it pass here? I replied: No, luckily it doesn’t.
A few hours later I got a phonecall from Selina. This I will not forget either – I was unable to speak after she told me what happened. This couldn’t be?
That evening (and more to come) I had an extra look at my children when they slept. I was about 36 weeks pregnant. The first few weeks after the accident… I believed that Meg and my unborn baby Lodewijk might be in touch with each other. Both partly on this world and partly not. Lodewijk Leonard Alexis. Lodewijk, after 3 (or actually 4) of my and Ingmar’s grandfathers (Louis, Aloyisius). Leonard: I kept thinking of a lion. As astral sign? Something else? Leonard, lion’s hart. We always liked the name Alexander. It’s meaning is saviour of men. Alexis means savior of mankind. Also of Meg.
Maybe a bit strange, but I’ve always thought (still do)  that names posess power. A name fits a person, tells a lot about a person. His/her deeds, character. I hoped that Lodewijk would show Meg the way back. Something like that.
When writing it like this it sounds a bit “dreamy”, but why not?
I’ve distanced myself from religion somewhat, but I do believe in the powers of mind and nature. At the service for the ill/wounded (led by a priest) there was lightning and thunder. It gave me the shivers, as that was something that I connected with. Two convictions wishing Meg strength and healing.
The same during the communion of a nephew, the Sunday after the accident. When everyone was in church there was a fierce thunderstorm with lots of rain. I walked throught it to my sisters house to see if I could help out there. When I walked back to the church, the thunder subsided and the skies turned bright and clear again, no sign of the weather except some poodles on the pavement. Then the children came out of the church.

A year after. We ate outside again yesterday. No spaghetti this time. I thought about a year ago.
How fast things can change! And how irrelevant things like looks and posessions are. My family has grown (not meaning my own family, but also my parents and siblings). Life has changed, especially  for my sisters and my parents. For me it changed as well, but different. I had just moved here on March 29th so I wasn’t used to irregular visits to and from family.
Actually the bumpy ride started before that already, in November 2013. I was tired of being in the beginning of pregnancy, and my sisters and parents also had their issues. After the accident there were ofcourse even more bumps in the road, soap on a rollercoaster continued. A soap because there’s always something happening, and a rollercoaster because one thing hasn’t ended or another issue presents itself. This is also very true for my sisters – one obstacle has been overcome, and the next one stands ready. I had my worries about my parents to – their lives has changed so much, it evolves around Meg. I am glad my mom can do so much for Meg, and that my sisters can do so much for Janna.
It had to be this way. There are so many coincidences… are they really coincidences? If I wouldn’t have moved here then the connection between my sisters and me would have been very different, as the burdens are most heavy here and not 200km away. The Hague is far away then. But also other coincidences, too many to mention.

Thursday, 11 June 2015

A year ago a revieuw by my sister Stannie

Stannie also wrote something on my request, as I know we all have different experiences and memories about that day.

Posted on Fb June 9th in Dutch, Below an English version.

6 juni 2014.
Ik ben net thuis. De frietjes worden gebakken. Er komt een ambulance met zeeeer hoge snelheid langs. Ik denk : poeh die rijdt hard. Gelukkig niet voor hier in de buurt. Dan moet er echt iets ergs gebeurd zijn.
Een paar minuten later gaat de telefoon. Het is Armand. Meg heeft een zwaar auto ongeluk gehad. (Oh shit....daar was die ambulance voor). Ze hebben het over een traumahelikopter. Hij kan Kim niet bereiken. Mijn ouders ook niet. Ik hang verslagen en in lichte paniek op. Ik moet Kim zien te bereiken. Ik begin te bellen.  Krijg haar niet te pakken. Spreek in.. bel Selina waar ik Eric spreek. De eetlust is inmiddels ver weg.  Ik blijf proberen Kim te bellen. Uiteindelijk belt Kim mij. Ik vraag waar ze is en dat ik haar kom halen (Patrick zou haar gaan halen) en vertel haar waarom. Ze wilt zelf rijden en ik zeg haar dat ze echt voorzichtig moet zijn. Dan bel ik met mijn zus Selina. Janna is alleen thuis (was ook in het zwembad geweest en thuis afgezet voor dat ongeluk was gebeurd) en weet nog van niks. Die haalt zij op en dan haalt ze mij op. We komen tegelijk met Kim bij Het AZM aan. De wereld op zijn kop. Gaat ze het halen of niet??
2 dagen later heb ik communiefeest van Stijn. Moet ik dat wel door laten gaan? We besluiten het door te laten gaan. Wat een loodzware dag. Wetende dat de kans er is dat Meg het niet zal halen. Iedereen vrolijk en feestelijk en ik... ik voel me ellendig. De dag door zien te komen en hopen dat Meg het red. In de kerk speelt de Harmonie. Meg zou ook meespelen. Tranen rollen over mijn wangen. De hele mis gaat langs me heen. Ik zeg een gebedje op voor Meg. Aan het einde van de dag wil ik naar Meg toe. Ik verlaat het feest en ruil het in voor de Picu. Er te zijn geeft me rust.

Nu een jaar later. Meg heeft al veel laten zien. Er is heel veel gebeurd. De achtbaan gaat nog steeds verder. Iedereen gaat er met op zijn eigen manier mee om. Patrick en ik konden dat niet samen. Een nieuwe achtbaan, met veel uitzoek werk. Waar doe je goed aan, hoe kun je het allemaal het beste regelen. Hoe bespaar ik mijn kids en familie een stuk verdriet.  Tijd zal het leren. Een ding weet ik wel; wij komen er wel!
Een achtbaan kan ook plezier geven en je laten zien dat er veel dierbare mensen om je heen zijn. Dat je moet genieten van alles!
Zeuren mag zeker...maar kijk ook verder. Verdriet is er zeker..maar genieten en plezier hebben nog meer.
Ik ben trots op mijn familie die elkaar zo goed als het kan en waar het kan  proberen te helpen.
Maar ik ben ook blij en trots  om alle lieve mensen om mij heen die mij steunen en dierbaar zijn.

One balloon went into another direction as the rest....
Picture made by Debbie


June 6th 2014
I just arrived home, French fries are being made. An ambulance is passing by with a very heigh speed and sirenes and lights on. I was thinking: wow that one is driving very fast, Luckily not for nearby as then something really bad has happened.
A few minutes later my phone rings. It is Armand whom is calling me. Meg was involved in a heavy car accident .(Oh ships... that was where that ambulance was for). They spoke about a trauma helicopter. He couldn't reach Kim. My parents were also unreachable. I ended the call, feeling terrible and slightly panicking. I have to get in contact with Kim. I start calling her, but she is not answering. Leaving a message..... Call my sister Selina, where Eric her husband answers the phone. My appetite is gone.... I keep trying calling Kim. Finally Kim calls me back. I ask her where she is so I can pick her up. (Patrick was going to pick her up) .She wants to drive herself and I let her promis to drive very very careful, Again I call my sister Selina.  Janna is alone at home (was also at the swimmingpool but dropped off by car at home before the accident happened) but she still didn't knew what happened. Selina picks up Janna and then me. We arrive at the same time as Kim at the hospital. The world upside down. Is she going to make it or not?

Two days later I have a Holy Communion celebration of our second son. What to do? Cancell all festivities, foods , etc? We descide to do as planned. What a heavy day it was. Knowing there is a realy chace meg won't make it... Everyone cheerful and happy and me....  I feel miserable. thrying to live that day and hoping Meg wil survive. In the church the harmony group is playing. Meg should have been playing with them too. Tears run down my cheeks. The whole Holy ceremony is passing without me noticing it. I pray for meg, At the end of the afternoon . I want to go to Meg, I leave the party and go to the PICU. Being there made me calm.

Now a year later. Meg has shown a lot, lots of things happened. The rollercoaster stil goes on. Everyone handles it in his or her own way. Patrick and I weren't able to do this together. a new rollercoaster started with many things to unravel. What is best to do? How to organise things? How do I prevent my kids and family from being hurt, or becoming sad?. Time wil tell, One thing I do know for sure: We wil get there!!
A rollercoaster can be fun too showing people whom care about you and that the best thing to do is enjoy everything and go with the flow.
Complaining is allowed... but also look bejond it.  Grief is there... but making fun and having joy is also allowed en needed. .
I am proud of my family whom as good as it goes and when possible, wherever needed tries to help and support. But I am also happy with and proud off all the people surrounding me, whom support and are dear to me.
  

Wednesday, 10 June 2015

A year ago the revieuw of my sister Selina

 As you might know I am from a family with 4 sisters. I am oldest in  line, after me Selina, Stannie and Debbie. We were all born within 5 years, (1975-1980). And nowadays even live in the same village including my parents too. I am thankful for their help and support, 

Posted by Selina on Facebook June 6th 2015 in Dutch below her English version.


"Vandaag een jaar geleden kregen wij 't telefoontje dat Meg een ongeluk had gehad. Die eerste uren van grote onzekerheid of ze het zou halen, de beslissingen die genomen moesten worden op basis van vertrouwen in de artsen. Mijn zus kwam tegelijk aan met ons bij de EHBO waar Armand en mijn ouders al waren. Daar kregen we van de dokter te horen hoe ernstig de situatie was en dat we er rekening mee moesten houden dat Meg het niet zou overleven.
Vervolgens is ze geïnstalleerd op de intensive care. Daar stonden Kim, Armand en Janna aan het bed van Meg en vroeg iemand of er een fototoestel aanwezig was. Mijn zus had haar grote toestel bij zich ..ergens.. in haar tas. Ik heb het toestel gepakt en foto's gemaakt. Toen ik door die lens keek, naar het gezicht van Meg... tranen rollen nu ook weer. Toch heb ik die foto's genomen... de eerste foto's van na het ongeluk toen nog denkende dat het misschien de laatste foto's van hun 4-en samen waren.
De eerste nachten sliep Janna bij mij in bed. Voor zover dat lukte. Ik had uitgebreide gesprekken met haar. Over de situatie, wat het betekende, wat de verwachtingen waren. Daarnaast heel praktische zorgen: het regelen van het eten voor Kim en Armand in het ziekenhuis. Om beurten kookte ik, m'n ouders, buren van Kim en Armand en vrienden.
Het heen en weer rijden met Janna naar en/of van het ziekenhuis. De geplande afspraken etc (tandarts, huisarts) die afgezegd moesten worden voor dit hele gezin. Maar tegelijkertijd ook voor mijn eigen gezin...ook ons leven stond op z'n kop en stil. Eric heeft de 2e nacht bij Meg gewaakt zodat de anderen even konden "bijtanken". Mijn ouders die samen met Kim en Armand de eerste weken de 24-uurs aanwezigheid op zich namen. En nog steeds zeer nauw betrokken zijn bij de zorg en revalidatie van Meg.
Een jaar verder... we zijn nu een familie van "voor en na" het ongeluk met ieder ons eigen verdriet en zorgen en juist daardoor moeilijk met elkaar kunnen delen.
Tuurlijk zijn er ook mooie momenten geweest en zullen ongetwijfeld nog gaan komen. Deze hebben allemaal te maken met de revalidatie van Meg. Ze doet het super!!! Het eindpunt is nog niet bereikt!  



"Today, a year ago we got that phone call that no one wants to receive. We got the message that Meg had an accident. Those first hours of huge uncertainty about whether she was going to make it or not and all the decisions that had to be taken based on trust in the doctors.
Kim arrived at the hospital at the same time I arrived with Janna and my other sister Stannie. Armand and our parents were already there. There we were told about how serious and bad the situation was and that Meg’s chances to survive were really small.

Thereafter Meg was installed at the intensive care. Kim, Armand and Janna were standing at Meg’s bedside and someone asked if somebody had a photo camera. Kim said that she had her camera in her bag… somewhere… I took the camera and wanted to take a picture of them 4 together. When I saw Meg’s face through the lens…. It broke my heart. Now again I have tears in my eyes. But I did take those pictures. The first pictures after the accident while I was thinking that it were maybe the last pictures of the 4 of them together.

The first nights Janna slept with me in my bed… as far as we managed to sleep. I had intense conversations with her about the situation, what it meant, what the predictions were.
Besides taking care of Janna other practical things had to be taken care of: taking care/managing food for Kim and Armand at the hospital. In turn I, my parents, Kim and Armand’s neighbours and friends cooked diner for the them and took it to the hospital.
I drove to and from the hospital with Janna whenever she wanted to go to the hospital or whenever she wanted to leave the hospital. On behalf of Kim and Armand I cancelled all the appointments (dentist, doctor’s, etc.) scheduled for the next 2 weeks. But I also had to cancel the appointments concerning my own family. Our live also turned into a period without any certainties.
My husband Eric stayed with Kim at Meg’s bed during the second night so Kim and Armand and my parents were able to get some sleep as they were awake for almost 36 hours. The first weeks Kim, my parents and Armand were in turn at the hospital making sure that 24/7 a familiar person was with Meg and she was never alone. My parents are still very much involved with Meg’s medical rehabilitation now.

It’s been a year…. Now we are a family “before and after” the accident and we all have our own grief and worries as a result of the entire family-situation and therefor hard to share with each other.
Of course we also had beautiful, good moments and no doubts that there will be much more good, beautiful moments mostly based on Meg’s rehabilitation. She is doing such a great job!!!! Final destination is not in sight yet! x

Selina




Saturday, 6 June 2015

A year ago

A year ago.. Friday June 6th started as a normal day for so many people, but it wasn't a normal day at the end. It changed a lot for Meg and our family but also for many other people. It started very early for me, getting up at 7 to continue working on wedding flowers. Janna joined me when I was going to deliver them. Meg was stil sleeping as they both had a day off from school as the school was closed. After delivering the flowers Janna and me went into Heerlen to buy new summer cloths for her. After lunch time we walked into a McDonalds for a milkshake, I stil remember the girl behind the couter asked if I was willing to buy a bracelet to support the Ronald McDonald houses in the NL. I bought 2 bracelets and we went home. Not realising I was going to stay in 3 of these houses since then. Back home Meg already left with her bicycle and her neigbour friend to the swimmingpool in the next village. The weather was sunny and her Hockey training was cancelled so she would be back at 18:00h. She never came home.

Janna called a friend and she I took them to the swimmingpool by car as Janna was too young to cycle without an adult. They were going to be picked upby the other mother as I was going to help in "Kasteelpark Born" (a zoo ) where they organised a dreamnight for families with disabled or sick children. I  was going to  be a voluenterer and felt with them. So I took a basket with my equipment and my camera and I took off,  ready to make kids happy. It started and when there was a calm moment I felt the urge to check my Phone. I had 6  or 7 missed calls from my husband and my family , sisters. brother's in law and even spoken messages. I didnot dare to listen to the message of My husband, even now I hesitate to listen to invoice messages.  I descided to call the last one whom called me, my sister Stannie. She said : "Kim Meg has had a car accident and it is bad, not good. They are talking about a Trauma helicopter....  Where are you? " I am in Born I replied... wait til some one picks you up. I said NO. I'll drive myself as that is faster as waiting ... so I took my stuff and informed the other felters, telling I had to go as my daughter was in an accident, they were shocked too, not knowing what to do or say;  just drive carefull! And that was something I did. I had a mantra: "Please Meg don't die you are strong, wait for me I'll be there soon. "Telling myself not to drive too fast no need to get involved in another accident. I stil remember a car keeping strict to the speedlimit.... so frustrating... but it avoided me getting a bill for going too fast...
At the hospital I drove into the carparkingbuilding at the same moment my two others sisters and Janna were passing me while driving to Emergency... I knew the way inside the hospital to get to the emergency. There me, Janna, my parents and my sisters, arrived at the same moment. We were taken to a seperate family room, where Armand was already there, he came along with the ambulance as he was at the accident site before the ambulance arrived. A doctor, named " drs.Engel"  = Angel  came in and told us that Meg was very critical injured and the chances were big she wasn't going to make it. I wanted to see her, could not believe it. We were taken to her in that special trauma room. unbelievable to see her laying there, eyes closed, wounds, tubes  a brainpressure pin in her head and lines everywhere. She was taken to the PICU and we were told the first 24 hrs were crusual to know if she would make it or not. We took turns in staying with her, Armand, her father, my mother, my father, Erik, my brotherin law. I think I laid down for only 4hrs or so, giving my body rest. Feeling so helpness. People all over the world starting lighting a candle for you, I believe no hour was without a flame for you.

They told us the brainpressure would rise after 24 hrs as that is the time a body needs to react to a crash. On Saturday the monitor showed us loads of things  Also that the brainpressure was increasing, something we were hoping and praying for not to happen. In the eve, the chirgeon talked with us, there was only one option: surgery, remove part of her skull go give way to the swallowing brains. When wil this surgery take place we asked? they said right after we walk out this door. Meg was already prepared to be transported to the surgeryrooms. I talked to meg telling her it is your choice to stay in this life, You must decide if you want to live in this body, which might not be doing the same as before, I let you go if you want to go. I love you but don;t want to hold you here if your time is up.  When you came back it was a succesful surgery, as the brainpressure was now more normal. But stil you were not in the safety zone... after 9 weeks PICU, you were placed in the Mediumcare section where you stayed 7 weeks, then we took of for 14 weeks to the Leijpark centre in Tilburg. And from December 18th you are staying in Adelante in Houthem- Valkenburg.

You came more far as the docs back then in the hopsital predicted. I do believe it is also due to the fact you were never really alone during daytime, I was with you most of the time, same as your grandmother and grandfather also your aunts and friends of us came and helped. A few weeks ago you asked where I was sleeping while you were in the hospital, I told you I was never far from you as I stayed in a Ronald mc Donald house conected to the hospital and same in Tilburg and now same in Houthem... you smiled now knowing I was always close to you dear Meg. Trying to give Janna some attention as wel, often feeling bad about not being able to split in two...

lefttop picu, lighting candles in the chapel of the hospital,
left down first MediumCare room, first room in Leijpark
I just looked back into the many pictures I took during your recovery until now. I am truely so proud of you the way you stil fight to learn the things again. Seeing the short films about you opening your eyes, smiling for the first time, keeping your head straight, turning over, moving your toe, pressing a button... and now just since a few weeks ago standing on your feet now and then, when making the transfer from bed to wheelchair. Everything stil takes lots of energy, but your willpower has never left you. <3 <3  <3
I try to stay as possitive as possible, looking back and wishing things were different doesnot help. That is not the energy we need. Looking too much in future is also not good as future is also as open as can be. It is what you make if it yourself. I need to remember that and keep trust in that things wil be fine. Trust in finding a place to live suitable for you, trust in getting a steady income again, trust to keep getting help, trust in finding a new life rhytm and landing in my emotions.
a picture made last week firts time you were wearing a headband again,
 you looked a lot like before <3
This evening Saturday June 6th 2015 we are going to celebrate life, by going to a concert from your percussionband group. A late in the evening visit for you, I really hope you wil enjoy it as you are looking forward to it for such a long time. Seeing and hearing your father and other people in your band play. Hope it wil do you good, I think you nowadays realise more and more what you cannot do anymore...

Last week we got good news! From this Monday June 8th you are going to be taking part in school again. a special school for children with special needs. For 1,5 hr a day between your therapy's. I do hope it is as expected for you. you really miss your freinds alot. Whom would have thought that you now were going back to school?  I am proud to be your and Janna's mother.

For Janna things are not easy as wel. She tries to get on with her life too, but she also misses you Meg and  me not being around at home. I love seeing you both lay together in bed and making fun like before, teasing each other, Love you dear Janna <3 <3 <3




Wednesday, 20 May 2015

PI-ART

Dear Meg and Janna, 
Last Sunday, May 17th, we had a selfmade dinner and lots of laughter, I loved seeing you two having fun like before. You both helped cutting the vegetables and adding everything to the dough to make pizza. Then you both went off to the playroom to use the PC's there,,, I was the one cleaning up everything, while listening to your discussions, Janna talking a lot and Meg using her speaking computer. The pc's didn;t work but you managed to use it in a different way
You both helped setting the table for dinner outside. Meg carrying it on her wheelchairtable and Janna assisting and running to collect what was forgotten. The Pizza was great!

 
You discussed it  as it wasn't a pizza anymore but maybee more a cake. Then meg came up with a new word for it: PI-ART. (a combo from Pizza  and Taart= cake). I was amazed by her 'invention'. Janna suggetsed something you sould type and let hear and she started drinking something, Meg was so fast doing what she asked, pressing the speaking button, Janna wanted to laugh but couldn't as her mouth was full with water... hilarious moments :) :)

I was happy so see this again as in the morning Meg was little down, she didn;t want to sit in her electrical wheelchair, didn;t want to use the controller. For my body that chair is better as the normal wheelchair, which has to be pushed. we agreed I would do the crontoller thing and we went off to the Ronaldmc Donald Kindervallei, as there was going to be a sing and dance performance from kids from Meerssen. We sat front row and had home make cake with strawberries. It was emotional for me, sitting there, holding your hand... knowing a year ago you would have been able to do things like that too. Again a nice moment when the conductor told the next song was the most polular song ever from Disney. if anyone knew the anser? A boy said Lion king, but you were already typing your answer: Frozen. And  put your hand up in the air. so you were next to answer. Fronzen was right and if you also knew / had an idea which song?? 'Let it go' you typed and said. Correct!! Your smile was great to see <3
After the performance it was time for your lunch in the clinic so i took you back. After your naptime i was coming again to take you again to the ronaldmcdonald. Jacqueline and her daughter came and we went for a walk outside this clinic park. We walked to the other side of the small river and sat ona terrace there buying some ice. Janna and her freind went of to play in the playhouse and you sat with us. you asked for a snack, but I said no, we wil make pizza later. I think the chef in the kitchen 'heard' you as suddenly a waitress came with a huge pile of 'bitterballen' a small snakc for everyone sitting at the terrace, so there you got 3 balls :) she came for a second round  and so you got 6 in total, Lucky you :) I thought nice compensation she had to sit and the other kids were runnign and playing around.
Time to walk back and say goodbye to our visiters, it was a nice afternoon. Hoped it cheered you up. 

On Monday we had to go and let us infrom about a wheelchairvan. Not a car as you need to be able to fit while sitting up in your electrical wheelchair. Many possibilities, but what to chose?? An advice wil be send to the insurance and if they agree we can start looking for a second hand Van. For me scary to know we wil be using this Van for at least 7 years before we can get a different one if this one doesn't suit. What if we go on vacation? what kind of supplies / assisting equipments do we need for you? how much space does it take? is it easy to find a parkinglot at the supermarket? The Van wil be long... or litle shorter depending on our choise,  what about fuel using average? so many questions to keep in mind, bah. How to descide? After that appointment Janna had an appointment so picking her up, to teh doc, waiting there , taking her back to school.. driving , driving, driving sigh. back to Meg, prepare dinner, eat, back to Meg tuck her in and then when i was in my room it was 21.30. I fell asleep immediately.

Tuesday morning you send me a  what's app to get your schoolresults from home, So I picked them up and we went thought it together. I told you when you had the accident and were in the Intensive Care all your classmates and teacher did a meditation for you, Making a circle , thinking of you  laying in bed in the middle of that circle. Focussing on you for recovery. We both had to cry.  you  thought no one cared, but they did Meg all of them even the boys! We also found a nice drawing and wish from you from 2 years ago, you wishing everyone having friends and getting attention from them, as you felt lonely... two years ago you felt like that and now again. so sad to see. You asked me to post it on Facebook and make an invitation of it. So i did, then I had to go again two important appointments. I came back after your nap and I was happy to tell you you had reactions to the fb thing. We couldn;t check as you also had therapy, I discussed with the fysio people about possibilities  in wheelchair etc. then dinnertime for you (and me , but not together) in the evening I was very pleased and happy to be able to tell you 3 freinds contacted me and are coming this Saturday . You smiled and typed: My message did work :)  I know how lonely you feel Meg, I sometimes feel very lonely too and I know that that is also due to myself, I mean i just sometimes don;t know how to plan it all, how can it fit into my busy week? and when I think Oh I have time it is mostly too late to call someone ...    I am a bad planner, I don't wear a watch and I cannot oversee longer as a week now.

Anyway today a new day with again 2 appointments, the one in the evening is nice: working with floral materials, a meeting once a month. Looking forward to that. Now Ibetter get dressed or i'll get a message on my phone again from you.. ' Mummy you can come, I am ready you are too late.... '

 
Ps. How time flies.... I stil want to blog about Scotland, but I noticed it was already more than nearly 7 weeks ago. I had problems with my tablet and internet connection. sometimes I was happy for it as socialmedia or blogging was just too much at some days. I don't even read a paper or watch tv, no time.... and sometimes it totally frustrated me as I had to answer mails and pay bills doing such things with my phone is not comfortable for me. Anyway, that was why i didn;t blog.

Monday, 27 April 2015

A concept post from weeks ago...

This is a post I started writing weeks ago, beffore I went to Scotland with Easter, but I wanted to share this as it is also part of this time in my life.

It has been a while that I wrote a blogpost. It has been quite hectic I must admit. And thinking back on the last weeks I cannot even remember precisely what happened or  whom I talked with. The thing   do know is that is was calling a lot with our social worker, the office of unemployment  and asking advices etc . I argued with the ones close to me, as I also had a day with no energy or positiv mood to get up and do the things I had to do. Just felt very tired...

Some of my ex-colleques, better said freinds  now,  treated me on a farewell dinner. They chosed to go to an indian restaurant in Sittard. We had wonderfull foods and a lot of laugher. Thank you Angelika, Cecile, Danielle, Florence and Jeroen I had a very nice evening. that night also the clock went to summertime... one hour less sleep... But a longer eve  with light.
On Sunday i left very very early to get the train to Arnhem, A big Felt exposition was there. I would meet some other felters I know, plus I was curious to see what  they all made. This time I thought it was time to wear my felted skirt and  most favourite shawl again. Fitted to the exposition . Unfortunately no pictures....

The time there was great, but also emotional... meeting friends again,  fellow felters, seeing how they proceed in their felting skills and me not being able to felt, something I did  nearly everyday .But my time wil come again too, I am sure.

The day after it was a cold one again with lots of wind and I missed my favourite shawl.... Thinking back , I was 100% sure I lost it on my trainjourney back.. so I called with both traincomapnies, filled in missing object forms but also was realisitc, I was never going to see it back.... just like my phone, I accepted it. Tried not to think about it anymore. And then after a morning being with Meg, coming back I saw it hanging on the heater... I felt very happy.

and another miracle happened , someone contacted my husband to say they found my phone!! I am super super happy and bought flowers, chocolates and a card  to give to this person. I got all my phone numbers back and most important the pictures and films too.

Sunday, 22 March 2015

Limited week?

Last few weeks were like a rolllercoaster again for me. We celebrated Meg's "Birth"day (9 months after the accident) on Friday and Saturday. Saturday was with the whole family together, I thought one group of people for half an hour is less intense as every 10 minutes 2 new people, asking the same etc. So after her afternoon nap at 15:00 h. I stayed in the main hall from the McDonaldshouse and my parents and sisters plus their children came in. A self baked cake was brought in by my mother, others helped with glasses, plates etc.  Then Meg arrived in her wheelchair smiling from ear to ear.


 She loved seeing us all together, 8 adults and 11 children...  We blew the candles and she opened presents. Enjoying it to the fullest. She even asked me when is my friends birthdayparty? I said just wait til your next real birthday in September, then we wil do a freinds party too...

After the kids had eaten their cake they went outside. First day with a lot of sun and temperature of 16 degrees Celsius. Thank you all for whom send a nice card to her,. She got them on Monday and Tuesday and Wednesday too.

On Monday I cycled Janna to school. Houthem- Meerssen- Bunde and the same way back to be with Meg again. I cycled this route too on Sunday. A good initiativ for my condition I thought... but  my goodness cycling for an hour,,, I did feel my untrained/ used muscles . However I planned to keep doing so.... Until that Tuesday March 10th. when we left later as planned, as Janna needed to be convinced we had to cycle, no car around. It was raining and cold but we stepped on our bicycles and we arrived at school. where I wanted to check again what time it was... but no phone where i put it back... I lost it!!! So I immediately cycled the same way back even on the wrong side of the street. nothing to be seen.. When I came back, wet and cold, I first called my own number, hoping someone wil answer it... nothing.. I warned family and blocked my simcard. I called the police and they said it is now task of the townhall office. Posted a message on fb and it was shared many times, but without luck :( I didn't have more time as at 11 o'clock Meg was finally getting her first swimmingpool session!   I helped her with her swimmingsuit and she was so happy, she was finally able to enjoy being in a swimmingpool. It helped me forget the disasterous morning. She used her right arm and leg like it used to be, but left wasn't moving much. However when she had to do as if she was cycling she was able to move both legs. Then back to reality...The pictures and films about last few weeks were lost... such a pity and a worry too, as they are very personal, what if the finder adds them to internet etc? Bah I felt sick of it and restless as no one was able to contact me.... no phone.... I expected calls from the lawyer and docter. On thurday I descided to buy a new cheap phone and a new prepaid number, just to be available again. On Monday 17th I received my new simcard with old number, installed it and was back available with my own old number  a good thing :) . I lost all phone numbers I had, from family, freinds, but also the doctors, therapists etc..., .

But during that same week I also had to move out the appartment here in the mcdonaldshouse, going back into a room as they had  many bookings for vacation in the appartement. So Wednesday I packed some,Thursday en Friday moved all. Meanwhile Janna got sick again too. This week was a limited one I hope.

Tuesday March 17th, the Birthday of my mother, but also my school and me planned a say goodbye meeting for my colleques and me. It was not something I was looking forward too. As saying goodbye is not easy for me, and  I love teaching but was in doubt what is right to do. Some students I have are not the easiest ones and  in the last year before Meg's accident there were "signs" on my path. But in my case now all with Meg I couldn't see myself teaching again ,,, It was a bittersweet afternoon. Knowing it is the right thing to do, but on other hand so much uncertain things now for future. Having no job means, getting an income from gouvernment, but with the task to hunt for a new job at least 4 times a month. It also means I cannot buy a house in future as income is too uncertain for a bank to give mortage,  Many uncertain things, but I try to think and live only in the present, today.... Anyway the meeting was a good one, it was good we did so. Many colleques came and it was nice talking to them again.some became really good freinds during the 10 years I worked there. Again a turning point in  my life...
Meg is since this week able to make her own bread in the morning, She uses a special kind of plate with knots at 2 sides, so the slice of bread cannot be pushed off that plate. She also got a borrowed electrical wheelchair to see if she was able to use it well. And she did! ofcourse she needs some more practice and after two days using it for half an hour she complained about pains in her back = A sign she needs to start using her muscles there again. to keep sitting straight :)

The week was passed by in an eyeblink and when the therapist wish us a nice weekend! I think no weekend for me not a huge difference with a normal day other as I am allowed to go to Meg the whole day. On Saturdaymorning I organised music therapy for Meg, which she loves. So visit can only come after her afternoon rest, but even then she needs to stand on the standing table.. sigh , for me sometimes so hard to plan visit...  so please bare me when i don;t reply to your request for a visit to Meg immediately. ..  not only Meg needs her rest..... :-)

Well this post is now long enoug, I better keep it this way and besides that time to go back to Meg again.. Bye til next post!

Ps. Wifi connection is sometimes a disaster here... just so you know.

Friday, 6 March 2015

A special Day

A few weeks ago, a nurse said to Meg, some nice trousers you got there!! Meg was smiling and I said, Yes she got them for her Birthday September 12th... I noticed Meg was watching a bit confused??Birthday???  I can completely understand why she was so confused as back then in September 2014 I had a problem... My family and friends wanted to come and celebrate Meg's birthday in the hospital, but  even the afternoon before the 12th I couldn't tell anything about that Friday the 12th, when family and freinds should come  etc. ... for me it was like a black unknown time. When I went to go for dinner I walked into the neurosurgeon and he said , "Yes, I am on my way to  Meg. I want to check her wound on her head if it was healed properly, so less chances on Infections...  as I suddenly have a free timespace in the operation room tomorrow. I replied: ohh that would be such a fantastic gift for her Birthday "  even the other doctor remembered me saying, I don;t care when this churgery takes place, even if it is on her birthday for heaven's sake we waited long enoug for it due to that wound don;t let a birthday be a stand-in -the -way. And my words became a profety, On September 12th , her 13th Birthday she came back from a 3 hours operation  just before the time she was born 13 years ago. She was complete again. Everything which belonged in her body, all the bones, it was there. I descided to postphone her party to a later moment where she would be able to take actively part in.

So that talk about the trousers reminded me back to that thinking of me back then. Meg and me descided  March 6th 2015 is a perfect day to celebrate her 13th birthday. As that is also the day nine months after the accident. A baby is also 9 months in a mum's body. And then a mother need to share her precious baby with the father and the rest of the world. It is the start of helping her baby develop in a happy person with selfesteem and a person whom can survive in this world.

Coincidently or not, from last Monday onwards we were told to give Meg the full possibilities  to focus on her rehabilitation. With other words we have to take a step back..... Meg and me are a team , she watched the clock and towards her brace and I asked the nurses: At what time was her brace attached to her arm??? Most often they said on on ... time. oh that is 4 hrs ago, it can be taken off.
Meg needs to learn also ask others and I need to learn to trust the people whom take care of her now when I am not there anymore. The new dayscedule was giving me only 2 hrs a day visiting time per day! I bet you all can imagine I was completely lost Monday and Tuesday. I cried in the afternoon, during the night and also in the morning. It was an abrupt change and it didn't feel good to me, also as I wasn;t able to explain it myself to Meg.... I called the doctor for a talk  (took my mother along for backup) and he explained why they want us to take a step away from Meg. I can find myself in his arguements, but 2 hrs a day is nearly nothing compared to the 7-8 hrs . So he asked what would feel good for me? I said be there in the mornings and come back in the evening. Also rules for visiters are more strict now, only on Monday, Wednesday, Thursday eve and in the weekend with max 2 persons at a time. I need to keep an eye on what Meg can handle, She looks  good and has fun when visit comes, but afterwards she is often exhausted. When I think it wil be a visit which asked a lot from her I don;t plan any other visiters anymore in that weekend. So to all whom want to visit Meg, please be patient a visit moment for you wil come eventually. Send her a card if you want, She will love it!

Meg Nijsten
p/a Adelante
kliniek de Valkhorst
Onderste straat 29
6301 KA Valkenburg a/d Geul
The Netherlands

It was also on that same Monday late eve my sister reacted to a link I placed on my facebook wall about a very special place in South of Scotland. I posted  I was dreaming/ doubting of going there to do voluntering work in the gardens. She wrote I think it would do you so good. I am Sponsoring 10 Euro, whom follows??  In half a day time she messaged me think you got the money and now you HAVE to go ;-) It made me cry again, but this time tears of gratitude and joy, that people some I even never met gave money for me to have a time out for myself. You know even thinking of me being there brings tears to my eyes. Feels like the afterbirth tears, all mothers will recognise :-) I wil definitely miss Janna and Meg and I think when I am there I'll be most probably crying for few days...  but I also know I need this too for myself  I'll hopefully come back with new energy .

But first tomorrow a day with presents for Meg. And some treats for the other children and nurses, She is soo looking forward to it, Janna and me bought a dress for her, It wil be her first dress she actually wears, ever since. As she wants to wear festive cloths tomorrow we gave it to her this evening, so the nurses can dress her in the morning,

 

As and exemption we are allowed to take her from 15h  to the nearby RonaldMc Donald house but with the advice of Max 2 pers. at a time. Which we wil try to follow, ofcourse.

Now bedtime for me, as an exciting day ahead for all of us, Let's celebrate life as it comes!!

Thursday, 26 February 2015

Talks talks and decisions

So far this week was a week with many talks. On Monday we had a meeting with the rehabilitation doctors, Meg's psycholoog, social worker, nurse and us, parents. Talking about the last  9 (!) weeks . The time since Meg arrived here at Adelante. A lot of things happened, but also still a long way to go. Most probably Meg wil need an electrical wheelchair as she can only use her right arm. I hope we can test if Meg can handle driving it by herself. When we know  that for sure we can order one soon.

Such talks are a pull back to reality for me plus a "fight" against the prospections. No one can vieuw in future and ofcourse I know Meg wil never be the same as before, but I do keep my dream of her future as open as possible, not adding any label on her yet. I believe in the strength of visualisation and positive vibes and common sense too, but also Meg is showing huge will to survive and works very hard. I hope she wil surprise many. I humbly ask you all again to pray for full recovery.

On Tuesday in the morning I had a talk with the sales representer of the speaking computer. We adjusted the computer to Meg's possibilities at this moment. Typing is going faster as in the beginning :) In the afternoon the neurologist from the hospital came and checked Meg's reactions. He had an idea to treat her toe and leftarm with Botox to weaken her spasm, I don;t feel right about it. I think there are other options/ possibilities before doing such drastic thing  (again).  I cannot find any scientifical report/ research about the reactions/ longtime effect to botox with children under 18. If any one knows please let me know. I am happy to read. I want the best for Meg and I am not a scientific doctor or so. We raised our children without much medicins other as as much homeopathical  or giving the body time to heal. I know the whole world doesn't have time as economy is more important and everything need to go fast and faster, but some things....  with patience, love and therapy.... It is just I don't have experience with braindamage...

Wednesday I decided to visit a museum called: "de kantfabriek" a special international felt exposition was there and it made my heart beat faster again, got inspired!  And the hour drive from our place to get there, it was over faster as thought as I loved the drive, seeing more as only the distance between where I sleep and you are... . My mother was with you, Meg, when a podiatrist came for your toenail. You started crying when she came in, hope I didn't scare you, when I told you she was coming to place a special little wire brace on your nail... Grandma told me when she was working on it you undergo it calmly. Proud of you girl!

Thursday, (today) You were on attached on the "stand-table"  you are now at 70 degrees vertical. for 30-45 minutes way to go! By the way, you really grown huge Meg <3
I also heard next week you will be testing an electrical wheelchair. Jippy!  Will give you more autonomy about where you want to be in the building. Fingers crossed you still have insight in depth and heights and you know to avoid bumping into things or the smaller kids... but guess practice will tell.....  You wil get a wheelchair drivers licence :)

Now on my way again, Thursday isn't over yet... Hope to get many reactions about botox experiences.Thank you in advance.

Til next post!





Sunday, 22 February 2015

a Week revieuw

Last week it was a holiday week for schools. Some people were bussy with celebrating the catholic festivities called Carnaval. Others want to avoid all that and went off for a week wintersport vacation. For you Meg it was again a week with therapy everyday. Fysiotherapy for one hour, from 9-10 you have to move your legs, arms and body (everything with help) but I see progress :) You practice sitting straight on bed,legs hanging over the edge,  hard work for you, using many muscles which had vacation for a long time.

The advantage of being in a rehabilitation centre during the vacation is that there are lesser other children, so it is more calm and quiet. One eve the other 2 boys went to the cinema with a nurse and you stayed there... I descided to have a movie evening too :) Rolled your bed into the livingroom, placed you to one side of the bed and Janna jumped in your bed too. It was so good to see you two so close together again. I had to "serve"two princesses now, but that was fine with me. you wanted an apple. so I washed and cut one for you both. Janna was ofcourse faster in eating it. You meg were waiting to be fed, but Janna was just saying, you can pick a piece of apple yourself with your fork!.... hihih good practice in a playfull way. I don't know if you saw the whole movie... was it:  How to train your dragon? " I cannot remember anymore....

On Wednesday February 18th you got your first music therapy. After some time you relaxed more and were less shy. Karin had a microphone with her and invited you to sing along, It was nice to see your interaction. We didn't hear any sound from you, but I am sure it wil come. It needs time.

Thursday was a day with a visit to the hospital for new X-ray pictures. As we don't have a car for a wheelchair, the nurses organised a wheelchair taxi, We asked to be picked up at 10,30. Appointment was at 11.15. At 10, the taxi was already there.. you just finished your fysio.... Anyway we packed you in and in the taxi driving to the hospital, You were watching outside, enjoying seeing familiar surroundings. In the hospital we were way too early and we went to the restaurant, you noticed a seat infront of you, and for me,  you suddenly stretched/ lifted your leg to place it on the seat. You smiled because I was so amazed :)    when it was nearly time we went to the flowershop of Miranda and she had seen you while you were in the medium care so she now was very happy to see you again. the flowers I placed in your main livingroom were gone and I asked you what color of flowers do you want? Red you typed... Miranda made a bouquet of it and we left for your xray. There they made pictures to check if your fracture in your left arm was healed properly. when we got out I caleld the taxi to tell we were ready to go home.... first she said it wil take one hour.... oef, I said that is long, Meg normally needs to rest at 13 h. She asked for a moment and when she came back to her phone she said in 30 minutes there is a taxi. We felt lucky :)

The drive back to the rehabilitation centre was one with flowers, self chosed grapes, and a present for Jonas, whom was going to go home from Friday onwards. we arrived at 12 just in time for your lunch. You were laughing about the things Jonas was telling you. In the afternoon you were all playing your special card game..... Jonas, his brother Jente, the new boy Milan, the nurse A. and you. It was good for me to see you were having fun. A pity Jonas was allowed to go home... but he deserves that too... and he wil come by now and then.

Friday morning you were anxious waiting for very special visit to come. Jacqueline with a new golden retriever puppy,Beau, were going to come. She is going to train this sweet dog for visits in clinics and old peoples homes etc. You were the first one for the dog to visit and you loved it! you were brushing it and after awhile you said let's go outside.... The weather wasn't bright at all, windy and cold, but it didnot stop us. Janna, Charlotte her friend, Jente and Jonas and you in your wheelchairs We played a ball game, was it soccer or handball, hard to tell a mixture with together made rules, fun to watch and the small Beau was running everywhere....  a great moment <3
Friday eve it was calm there. Weekend started and that means kids whom can are staying over at home. You asked me when can I go home too? I couldn't answer, I explained I have to ask the doctor again. Wait and see.

This eve, Saturday 21th of February, while I was preparing you for sleeping one of the nurses said you reminded her you needed medicins while eating... I felt proud of you again dear Meg!! Again a small step forward as you remember you need medicins at a certain time.