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.

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.

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.

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!!

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!

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.

Reaction to a visit home

The night after you visited your home again you sweat a lot and was very restless. In the morning when I was there again, you wanted to have a bath after you were finished with breakfast. A tosti :)
There were many kids needing attention of the nurses, so when Janna came in she helped me getting you in bath... Although everything she wanted was watch a movie on my tablet....
So while you were in the tub, she was watching a movie, you also wanted to watch too.. hmm how to find a solution???  I used a bathpillow, turned it upside down placed it on the taps and there it was a nice movie place :). I don;t know how long you stayed in the water and Janna sitting aside, both watching the film... but Meg, you nearly fell asleep again... so after bath, they tried to give you some lunch but you were again too tired... you slept til 15.00h. You father and best friend Mae and her parents came.

During dinnertime you kept eating... In the morning you asked about the tube going inside your belly. In Dutch it is called a (P.E.G. sonde ) This tube is going directly into your stomach for liquid food, You got it since beginning of September 2014. And now you asked the nurses to get it out.... They answered it can only go out when you eat enough by yourself. I think you now knew what to do.... so proud of you!
In the evening and days after your visit home, we descided better no visit for you anymore for few upcoming days, as you were visuable tired of it and thinking about it.

From Wednesday onwards your liquid food during the day has stopped, only during the night you get 650ml and the rest of what you need is in your food and special drinks.
You tasted them all, with vanilla, strawberry, chocolat or banana flavour. I think chocolat is your favourite so far.... hope the feeding during the night also stops soon.... you like to eat and taste everything again. Cooked food, soups, cake, snickers, mars, twix, chips, candy , etc.

thursday morning after I Took Janna to school and delivering a gift I enjoyed this drive in the fogs very much. 

During last week I also got a talk with the doctor I hoped to take you to the Carnaval parade in our village on Monday, Incognito dressed up in a van along the route somewhere where not many people are but half way that week I realised that would be too much. The same the doctor adviced too. He said it is too much for Meg. A pity I know dear, Meg, you were so looking forward to it, but we wil find a movie from it on You Tube I am sure.
We were allowed to watch the school carnaval parade here in Houthem on Friday. When I cycled towards you, I heard Carnaval music and people getting ready. Out of the blue I felt so sad and had to cry... How life has changed so much. Thinking of 2 years ago, when you were the princess carnaval of our village, How would you react to see this parade? ?
At 10 the parade started first off the grounds of Adelante and we waited for it to come back again. Standing outside at a building where I can take you for shelter in case of panic or so....
You were already dressed up as a minion, with your special medaillel :)  the parade came, with small kids first and then the harmony group. I had to cry again a double feeling, happy to stil have you sitting in a wheelchair and all, but also regret as no jumping around for you and me this year.... I stil hope you wil one day be able to have fun again during Carnaval like you used. Fingers crossed.

Saturday eve you knew the new Prince, Princess and Adjudant plus their guard of eleven, were having a reception. It would have been your turn to help during that eve with storing away the presents the new princess was going to get. Janna was instead of you and we had a skype session, so you could see it all too. But I also saw frustration for the first time from you. You wanted to show them your medaille, but no one had time...  and light was bad so not much to see, only hear. you pointed out text to me, but were so fast i couldn't keep up with you.... sorry dear Meg, you had to start all over.. I ended the skype session and prepared you to go to sleep by listening to calm music and brushing your teeth etc. Sleep tight.

Today Sunday 15th, I heard you only slept from 02:00- 8:30 I bet thoughts kept you awake. It was very sunny weather and you wanted to go for a walk outside so i packed you up and rolled you outside. We went out twice today, Love seeing you enjoy being outside. We always end up in my appartment here in the ronald mc Donald house. You discovered I have sweets to eat, hihihi  Good to have you here around. I don;t have a moment rest, but  I was able to prepare some of my dinner  :)
Hope you wil sleep wel this night, Till tomorrow dear sweet Meg. Janna is celebrating carnaval with her cousins and nieces. I hope she wil enjoy it, she deserves it. <3 Have fun to you all whom celebrate carnaval or whom are on wintersport.  Enjoy life, I do so too different as before but that is fine too.