From one of the many encouraging messages we received, the closing line was a very wise life lesson: "Life is a rollercoaster." None of us ever consciously chose to hitch a ride on the roller coaster, but each of us knows all too well what a winding course the ride entails.
Already a month away!
One of our favorite rollercoasters is "The Ride to Happiness by Tomorrowland." The feeling you get from the start is incredible. You get turned upside down twice, make a 360-degree loop and start accelerating in a way that would make Usain Bolt puff. We are actually only a good 20 seconds into the ride and the real loopings, screws and tumbles are yet to come. The whole ride takes 1 minute and 30 seconds and is the ideal description of the month we just had.
Because that is how long we have been on the road. A few days ago we could say to each other, "a month ago it was panic and now look at us." Ella-Marie amazes us more and more every day. If the leg or arm doesn't want to cooperate, she still does everything she can to be able to take that extra step. Figuratively ... but also literally!
Forward
Last weekend, against all odds, Ella-Marie sat up straight in the couch and said, "Daddy, I want to walk." With a tiny heart, I held out my arms, got a firm hand and a limp hand shoved into my hands and looked into those beautiful blue eyes. With a delicate smile on her face she straightened up and then it happened ... with a hip movement the left leg was raised, the foot went forward and her first step was taken. The pride that radiated from her pretty face will always be a motivation for us to go the extra mile.
It doesn't stop there
Rollercoasters go up and down. Even in the case of Ella-Marie's mood and (physical) progress, we see the known ups and downs. A known frustration is the morning laundry moment. It is still very difficult to put on or take off clothes by herself. Standing up without support is not yet possible, so washing with a washcloth completely independently is not yet possible. On the other hand, she was extremely impressed with herself when she got her right stocking on by herself.
The biggest progress this week was in the mental part. And as
often happens, that progress came first after an emotional
moment.
Ella-Marie was told over the weekend that she must learn to sleep
alone. Starting next week, none of the parents will be sleeping in
Pulderbos. And to prepare her for boarding school life, we started
sleeping in another room from Tuesday night.
After the evening ritual, Ella-Marie was put to bed. Spotify
provided the quiet music, a nightlight jumped on and the fluffed up
pillows got their place. A few more minutes of cuddling and then
Papa Pieter said "goodnight dear, see you tomorrow." About 33
seconds later a message was already sent, "Daddy, I am very
sad".
After a huge duel between the father heart and father brain, it was
decided to send back, "I love you dear. Sleep well and tomorrow I
will come and hug you awake". The attendant had to help one more
time that night because the left leg was hanging out of bed, but
otherwise she slept soundly.
Ella-Marie has been sleeping alone for 3 nights now and she is doing great!
And we continue
Over the weekend, Ella-Marie is coming home. On the schedule are a few small visits, but mostly rest. Because we notice that rest also provides learning moments. For example, those first steps came after a quiet moment, her speech improves after a nap and she looks clearer and clearer out of her eyes after a good night. We are aware that the rollercoaster will still make strange screws, steep inclines down and up. But what we are especially proud of: Ella-Marie is very deliberate on the coaster and does everything she can to steer it as best she can.
For those who want to ride along on the real rollercoaster, take a look at The Ride to Happiness by Tomorrowland