Our greatest fears came true for a friend of mine.

The third angel I had the privilege of knowing has passed away. And my heart breaks for all of the parents of the kids taken away so young.

This is a pain I am not yet familiar with, but it is the pain I know that will hurt the most.

This is the pain many special needs family's fear more than any diagnosis or treatment. The pain of saying goodbye to the person who formed you more than anything or anyone else ever could.

And this special person formed the whole family dynamic. Everything revolved around their care.

Vacations were planned around their needs.

Their parents were absent for a lot of their siblings life.

I fear for the time, just after the loved one will be taken, what will the sibling/s feel? How will they react? How will we react? I know there will be sadness, but what other emotions will be lurking around?
Anger? Resentment? Maybe even a sense of relief? How will we deal with that?

I think it's important to start dealing with these emotions while our loved one is still alive. And that may be easier said than done.

As for the resentment and anger emotions, we try to do as much together as Jacques will allow.

We take holidays with Jacques. We go camping as a family. Jacques loves the outdoors, he loves swimming and he LOVES socializing.

Weird, right? He loves mingling and interacting with strangers. BUT, and this is very important, ON HIS OWN TERMS.

When he has greeted you, and maybe pulled your hair, he has had enough. He will say bye and go seek his next victim.
This is why we let him mingle on OUR TERMS. My husband and I understand each other so well, that without saying a word we will know when Jacques has had enough and it's time to move before a scene happens, and it will happen. But that understanding didn't come all at once, it comes from years of caring for our son, together. Going on camping trips, together. Ruben is amazing at these camping trips. On our last holiday, Johan and I had reached our limit. We were on the verge of packing up and calling our short camping trip off. When Ruben came and took Jacques, he helped him into his wheelchair and he took him for a stroll around the camp site. It gave us the opportunity to breath and to recollect ourselves.

We stayed until the end of our planned trip and had a great time. All thanks to our 10 year old acting a lot wiser than his years.

We also take trips without Jacques.

Johan and I try to take at least two trips a year without the kids. Just the two of us for a weekend. We catch up. We reconnect. I cry, he listens and then we let off some steam. That is all I will say about that. 😜

We have had one long weekend away with just Ruben and I really want to do it again. It was amazing. We got to see a side of our child that we rarely have the opportunity to enjoy. He could let loose and be a kid. I am happy to say that his inner Ruben is becoming more evident even to other people, and I am very proud of him for that.

What we also do, and my fb friends can vouch for this😜, we do a mother and son afternoon/lunch.
He picks the restaurant and we spend a meal together, talking and reconnecting. And sometimes daddy gate crashes, but we don't mind...

We catch up on each others lives. This way I can maintain a strong bond with him, while knowing that he understands I have to give Jacques more attention.
And what I have come to realize about this incredible little human, is that he is a funny, bright, amazingly intuitive, sarcasticly brilliant little man, and I thank God for him, every single day of my life. And the little man part is correct. I think some people may get the wrong impression of him when they first meet him. And I ask you, if you do know my son, look deeper. You will be amazed when you see him through my eyes.

I really pray that these things we do now will be enough when our time comes to face the pain we fear the most.
I am still a bit worried about the feeling relieved part of the emotions we will have to face.

But I pray everyday for the Lord to guide us further on our journey. And I believe if there is more we can do now to ease the pain later, He will reveal it to us in time.