How to be a mom, and be incredibly sick...

As you probably understood, I am quite sick.

I have a few illnesses but the one that disables me is called understand Ehlers Danlos Syndrome.

MAY IS EHLERS DANLOS SYNDROME AWARENESS MONTH.

that is why this blog is for all moms with eds or other chronically illnesses for that matter.

My kids and school...

My oldest girl is in highschool so she does her stuff herself. She wakes up and just does her thing, I do try to be there for her so she is not alone.

My youngest is eight and she loves to make her own bread, and I make her drink and snack for school and help her start up. If she is ready we always hug and kiss and then she is of to school with my husband.

When they are at school.....

My days are a struggle everyday 

Between what do I WANT to do, and what CAN I do...

Doctors have tested for weeks and have concluded I fall a sleep at least 4 or 5 times a day and I dont even know this..that is quite dangerous if your drinking hot tea of something... Also the fact I often just cant stay awake is confirmed so were now in a phase were we learn to live with this...

Art is what makes me ME... I always loved every form of art and I love to make all kind of things.

When I manage to stay awake I try to make fun things,                                                           first of all my animals need to be fed and cared for, (we breed tropical moths and butterflies, we have a load of baby axolotls,  of course the grown animals, 2 dogs and a bird) when thats done and I still can stay awake I want to make cool things.

The moths I breed I pin and frame sometimes to (if they died pretty) at the moment I have a few I decorate with leave gold, I design clothes, and make art out of all kind of materials others would trow away. But...... this would be a good day

....

Most days I sleep almost all day untill my kids come out of school. They are my everything and I will try everything to stay awake for them.

My husband gets the little bean out of schooo most of the times and other days a mom from school and one of our neighbors helps us out. Once they are home we almost always take a moment to.talk about their days..... 2 whole different stories at these ages I love them both so much.

Sometimes there is a day I just CANT stay awake and thats something I feel so quilty about, even though we have make sure everything is safe and they can amways wake me up for anything but its horrible when you try to do everything as good as you possibly can but your body just shuts down...

We have a moment for a drink and snack. After that we chat about how their days were. My oldest daughter has a incredible amount of homework so often busy enough and the little bean has playdates every day and the days she doesnt she loves to draw and make things of her own.

Of course there are days that a totally crap, I cant stay awake, or have so much pain I cant do anything and that makes me angry and sad. But I make sure my kids will see and feel mom is doing everything to make them happy and be there for them! I think nothing is more important then show your intentions.

In the weekends we do try as much as possible to do fun things. And go out.          That way we keep the fun in the house.      It does not mean we do big things every weekend but just small things, just go out out of this bed and room I lay in every dan 

Conclusion I guess is that as a disabled mom. You have to plan and think almost everything up front. We cant do things spontaneously but we do try to come up with things to keep the fun in life and take the focus of my illness of disabilities so the kids can shine!.

Every day, every moment, is on a scale... what do I want to do what does it cost me phycically and what does it give me emotionally.

And that last one is so incredibly important.

I live from hospital to hospital

From dream to dream

From obstacle to obstacle 

But non of it matters if my kids aren't happy so THAT'S what I truly live for and THAT'S  my reason to hang in there.

I think being a mom is a honour. It can be hard to (long live puberty and things) but its worth every moment we have. Cause if you are sick and have to live like this just a few things in life are a sure thing and kids are one of the

Life does not have to be perfect.

Life does not have to be a fairytale 

As long as you have love in your heart

As long as you know you try everything to make your kids happy 

Its worth every breath!