As I sit here this morning with my cup of coffee & still in my pj's it's almost 10am. I realize that I haven't gotten much done yet today for my symptoms were getting the best of me.
But I did make it to the bus stop to get my kids on the bus & I did help they get ready for school. And I even managed to run the sweeper in one room of the house before I fainted. You see when you write it all out in a day what you truly do, you might just find you did more than you think.
I was officially diagnosed with chronic illness 3 years ago. What started out as postural orthostatic tachycardia syndrome , dysautonomia, & a heart asd ( hole in my heart)... Has grown into a lot more this past year as my pain has increased tremendously, they found a brain tumor in my right temporal lube that is being watched, they found problems in my spine with Stenosis & some spots putting pressure on my spinal cord , they found multiple connective tissue problems in my eyes as my vision has gotten blurry and worse , and they found that some arrhythmias have become more frequent. So now we wait to see the geneticist to confirm EDS Ehlers danlos syndrome & my daughter also got diagnosised with dysautonomia last year.
Yeah what a darn list right. I told the drs they need to stop giving me tests for I seem to fail them all LOL:) , I know not funny but somehow the humor gets me through it.
So I am sitting here I was thinking of what I hear all to often. " Tara , you look tired!" Or even my mom likes to joke and say " I look bitchy!" LOL . Well ya know what I think. I am a full time mom of 2 beautiful children, I have multiple chronic illness's that I struggle.So I am pretty sure my face just looks like this now ! Lol
You see I have learned I am always functioning at my worst just somedays I dress it up with eyeliner and a smile.
It's challenging enough to be a mom but when you throw in chronic illness , which you know your ass isn't getting better & trying to thrive dispite you challenges in something that brings you passion to life. Well this can be a up hill battle to say the least. For it's all about how we manage.
I have dreamed since I was a little girl about becoming a mother one day. And my children are my best achievement I have ever done in this life for sure.
My pregnancies were rough struggling with hyperemisis with Paigey & bleeding all the time with Brady. But as they made it healthy into this world all those struggles were so worth it. I had no idea at this time that I was sick but looking back today so much of my life makes sense.
With my children now being 8 & 6 years old. I think of the things I have done in my life to help me to feel like I am still conquering this entire motherhood process while having chronic illness.
It's no easy task I will tell you now. And what works for some won't work for you. It becomes trial and error along with a constant tweaking process.
My energy is limited daily so I have learned to practice keeping my stress low and letting go of perfection.
You know how everyone is always worried about how clean their house is. Well you know what happens you clean it and no one comes over when it's clean lol. Seriously as long as its not to the point obviously it a health issue. All us moms have messy houses at some point. Relax and tackle one room at a time.
I remember hearing well try to keep all your kids stuff in one area.... yeah right this was impossible for me. So what I have been doing instead is I created responsibly charts for my kids so they can do their own self evaluation process daily. And so far this is working nicely and creates me a energy saving mode.
Another thing I have created is a behavior tracking system so my babies can stay accountable for their actions with out mama losing her cool & ending up passed out on the floor. This too is working for us and my kids are so darn proud of it. My Little man is surely the more handful as far as actions compared to my daughter. But then my daughter is the more vocal child. So this give them the opportunity to not be compared to one another while still being able to reach their daily goals.
( it's amazing what you can do with paper plates , string, crayons, hot glue & clothes pins) I think my kids loved it even more for mama made it for them.
Our jobs as parents isn't to make our kids perfect it's to help them to grow up to be good people.
My kids are amazing and I love them unconditionally. We have learned so much together through my journey. They have become more aware about health & fitness , along with have the most compassion for others I have ever seen.
So if you are finding yourself in guilt as you are living with chronic illness and trying to be a parent. Know that no one has this journey all figured out and if they tell you they do they are full of shit. Our lives are always changing wether we are living with chronic illness or not. But when we stay focused on what we can do and not what we can't. That's how we too have the opportunity for growth.
I know it's exhausting, trust me I know. I cry every single day. But it's ok to not be ok, for if you make it out of bed each day... you win! No 2 days will ever be the same , and embrace all those good days for they will always get you through the shit ones.
And if you are having people judge you and say hurtful things... I know this can be a hard pill to swallow, but try not to take it personally for others don't always understand what they can't see.
And as you wake up to know you are going to battle your body yet another day. Know this...
One of the greatest feeling we can stay focused on is having hope for our lives are not like anyone else's this is for sure but we too as parents have the power that if we don't sweat the small stuff we can show our babies the most important things in life their is. For life isn't about all the stuff in it , it's about the memories we get to make through it.
So if no one told you today, hear me now,
YOU, are a wonderful mom and you are doing the best you can. Now go look in the mirror and read this paragraph again. For the best success we can ever have is knowing we kept going despite all the struggles we have!