“Moyamoya syndrome is a disease in which certain arteries in the brain are constricted. Blood flow is blocked by the constriction, and also by blood clots. A collateral circulation develops around the blocked vessels to compensate for the blockage, but the collateral vessels are small, weak, and prone to hemorrhage, aneurysm and thrombosis. On conventional X-ray angiography, these collateral vessels have the appearance of a “puff of smoke”.

I never thought that at age 28, I would have to worry about the likelihood of having another stroke, counting how many times I may have experienced TIA’s, and having to rest on a bed of anxiety as I try to catch my breath.

I wasn’t diagnosed until after having my first baby girl and experiencing a stroke. During that time a whirlwind of emotions “broke” through my inner most peace. I never realized hardship and the feeling of helplessness until that moment (and even still some moments present day.)

I was supposed to be enjoying these moments cuddling with my baby girl, experiencing first time parenthood exhaustion, and bickering with my husband about who changes the diaper next- you know, the normal stuff every young married couple deals with after having their fist kid. I was supposed to complain to my friends about how “men” are men. I was supposed to continue on living without the thought of an expiration date.

I wasn’t supposed to worry about how long I’m supposed to  live, how much I can take, and having to rely on others to take care of me on my worse days. I wasn’t supposed to lose control. I wasn’t suppose to worry about being a burden. I wasn’t supposed to experience the helplessness of feeling like I was losing myself in a disease that defied who I was- I was active, a bulldog, a passionate woman who controlled every aspect of her life (or at least allowed myself to think this way). I was that goal oriented take charge kind of gal…

and then all of a sudden my world felt like my dreams and energy were built on how much this disease would allow me to have. I felt cheated. My only wish was to at least let me live long enough to be there for my daughters through their life. I want to be able to hold them and know their scent and have the opportunity to gain and form that bond I know EVERY little girl needs with their mother. I didn’t want them to be cheated out of it either. I just didn’t know how to fight for it at the time. If fighting was even possible.

It was one of the darkest moments of my life.

I wanted to see my husband become the man I knew he was meant to be and could be. I wanted to sit back like every other female out there watch their girls become daddy’s girls as they experience what having a father is like. I wanted to feel my heart melt, without it being tainted by thought that at least I know he would give these girl the world if I wasn’t around. I wanted to feel sentimental, without that passing prayer asking God to allow me to be here with him so that he wouldn’t have to do this alone.

It was one of the darkest moments of my life.

I wish I could confidently say… I don’t ever FEEL this way. That I have my happy ending without any symptoms because it’s not true. I still have very bad days. I have very good days. I have days I feel bad for my husband… because he has to experience taking care of someone who should be healthy alongside him. I have days I cry as I watch my kids grow before my eyes… praying I continue to be there. I have days I feel like a burden and helpless. I have days feeling like  Super Woman.

What I can say is that fighting for the good days is worth it. That fighting doesn’t have to rely solely on your helplessness or if you can even fight it. It’s just that, fighting. You push through and grab onto the hope. Don’t allow yourself to fade and let yourself and those around you down.

“You are not helpless. You are not a burden. You are a better version of who you were.” That’s what I tell myself. That’s what I have to believe.

22 thoughts on “Fighter

  1. sarahsmith1988

    What a moving post! Take your own advice hunni, and keep telling yourself your not a burden, you are a better version and never give up that spark!
    You can do it! xox

  2. I got asthma as my gift from my first child, bless his little heart. My cousin got rheumatoid arthritis from her first. Pregnancy is a powerful thing, and not always for good on the mom. I wouldn’t trade my three kids, but I would happily give up the health problems that came with them. I am sad for your health problem. It’s scary for sure. I love your spirit of not giving up. XOXO

    1. Thank you Brenda! That must have been life changing. I have the most wonderful support system and I just know that I am not alone. Thank you for sharing your story. Kids are the best and most amazing miracles. 🙂

      1. Dr beautyfix

        I’m a doctor by profession and on daily basis I see a lot of cases,sometimes we think I wish we could do more for the patients.Stay strong xo

      2. From my stand point having been a patient many times… doctor’s like you changes lives forever ❤ Thank you for being so caring. Fighting!

  3. Brought tears to my eyes reading this. Well done for putting it out there for people to read. I had never heard of Moyamoya syndrome before reading this and between 30 years in nursing and now working in massage and aromatherapy I have come across a lot of, “rare” conditions. I am sure your determination will be something your girls will cherish forever!

    1. Thank you, my girls mean the world to me! I’ve come across many people in the medical field who have given me hope. It was actually a kind hearted nurse who took the time to print information out for me, console me, and bring me hope when I was left alone at the hospital soon after I was diagnosed. Thanks again for your kind words

  4. Pingback: Fullest Fifteen: Introducing Mom Blogger Ari Davis – Fullest Mom

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