When you close your eyes and imagine the ideal moment of family life, what do you see? What is your picture-perfect moment? Have you experienced it in your life already, is it a part of your daily life like having a breakfast or a dinner around the table together or maybe you are just dreaming about it to happen? Whatever the case one thing is certain this vision was, is or could be the happiest moment when your heart sings and you feel blessed.
You know, my picture-perfect moment when I think about family life may appear fairly simple. I had it in my head since the birth of my son. When he was just a tiny baby I imagined three of us having a nice bike ride somewhere very scenic. The weather is perfect, warm and sunny, beautiful nature, we are riding bikes, exploring, having an adventure, being together. I was determined to make my dream come true so our son learned how to ride a bike very early.
It is fair to say that I like cycling but I am not crazy about bicycles, however, that image in my head was a symbol of a happy family life. Eventually, we had many very nice rides with our son either in his child bike seat or riding his bike.
When our daughter was born I started dreaming about four of us having a beautiful bike ride with a picnic and making family photos. Sounds cheesy, right?! But this is me.
When Olivia was diagnosed I knew that our life will not be as I imagined it to be. I thought of many limitations that her condition would impose.
This block post is not about what we’ve been going through since the diagnosis. First shock and fear of how our family life would look like from now on have passed after some time. Our life didn’t feel any different in general if you take the mental struggles out. My mental struggles! Different story anyway...
When things settled down a little bit and I dared to dream again I started to think about the same picture-perfect bike ride.
I hoped that Olivia while still little would fit and tolerate the baby bike seat. The time was perfect. Spring. Warm weather. Everything is so bright, looking fresh and joyful. We took our bikes out from the shed a day before to check them. The picnic basket was ready.
Next morning we left the gate and headed to our local park. Straight away we saw that Olivia clearly wasn’t alright in that bike seat. We rode a little bit more and a bit more. I couldn’t take my eyes off her almost feeling myself how uncomfortable it was for her.
But come on, it is my dream!!! Having a bike ride with my family. We all meant to enjoy it as per my picture-perfect plan. My ego kicked in...
We’ve cycled along the river for about 20 minutes until finally my husband stopped and said: “Enough! See, she is so uncomfortable in that seat, it doesn’t suit her. I can’t take it anymore. Feel sorry for her. We are turning back home, take the car and come to that park where we were heading to. You and Dominik go ahead and we’ll meet there”
I couldn’t explain what happened to me at that moment. For the first time, I realised that we actually ARE limited by Olivia’s condition. I felt resentment because having a bike ride is such a simple thing, but apparently, we will not able to have even this simple thing because the seat doesn’t suit Olivia and most likely she will never be able to ride by herself. What else we won’t be able to do in the future? I had a childish tantrum, absolutely irrational. Tears stood in my eyes. I was about to explode like a three-year-old who didn’t get requested Christmas present.
Eventually, we all turned back home. The idyllic ride was ruined. When I think about it now it makes me laugh how silly I must have looked. I was convinced that nothing would solve this problem and I just have to forget about cycling altogether.
Research and find
Later on, I and my husband had a conversation and have decided that we would research and find the solution. And we have. We found on the internet kids’ bike trailers, which looked fantastic and very promising in terms of comfort. The only thing was the price. Reasonable for a good quality item, but too high for our budget especially that it is not essential.
In a few days, my daughter’s teacher at the nursery gave me a leaflet about a charity that supports families with disabled children. Its main purpose is to help families improve their quality time together and help children with special needs to live life at its fullest by being able to have fun activities.
That moment I thought about a good sign from the Universe that sends me this charity and wants to tell me not to give up on my dream. We contacted that charity and applied for the grant to buy the bike trailer for Olivia.
I wasn‘t counting on much. Any contribution would be welcomed and much appreciated. I was over the moon when they covered the whole amount. We didn‘t pay a penny for this bike trailer.
It took us several months to get the trailer and once we‘ve received it the summer was gone. Thankfully, October was still fairly warm and dry. We had our picture-perfect bike ride. All together with Olivia looking relaxed and content.
Raising a disabled child wasn‘t something that I wished, planned or was ready to have in my life. First, when I faced this perspective it seemed unbearably tough; physically, emotionally, mentally. I felt lonely and lost. But it is amazing how my life became more meaningful with Olivia, how things are manifesting for us and problems are resolving almost by themselves as if someone or something much more powerful and mighty supports me invisibly and letting me know that disabled child is not a limitation but rather enrichment of my life.
What I learn every day with Olivia is to think out of the box and be creative. Finding the solution that is not mainstream or straight forward is something that keeps my brain sharp. I wish our family to have the same fun experiences that other families with healthy kids can have. Surely, we would need to adapt, but it makes the experience even more desirable and significant.
What would be the next challenge? Maybe mountain skiing?! Bring it on...
with much love