Monday, 20 August 2012

Welcome to the club

Every now and then, a 'newbie' arrives at the CHASA* group on Facebook. Someone's child has either just had, or has just been diagnosed as having a stroke. No one can forget being at that place, and we embrace people who've just arrived. It's a dark, confusing place and it doesn't matter how many people are standing there with you. You feel more alone then you've ever felt before. Recently, I got to thinking about the things I'd say to myself if I could go back in time to that moment. So here goes.....

*Children's Hemiplegia and Stroke Association

I would tell myself, it's ok to grieve..... It's a strange sort of grief and one I've touched on before. I never felt like it was appropriate for me to feel sad, when I had so much to be grateful for. Those first few hours at the hospital, before being told of Max's diagnosis were absolute terror, in it's purest form. I remember thinking 'please don't take him, please don't take him, please don't take him' like a broken record over and over again. Once I knew what we were dealing with, I was ok. I didn't think I had the right grieve, when I had so much to be thankful for. How can you grieve for someone who is still alive? More recently, someone told me it's ok to grieve. Although we didn't lose him, something else was lost that day and it's something that will never return.

I would tell myself, it's ok to be afraid.....Two days later, the doctors would sit us down again and tell us our son had brain damage. If I could go back in time, I'd tell myself it was ok to be afraid. Fearing the future doesn't make me ungrateful, it makes me human. At the time, it felt as though everything I'd dreamed of for my son had gone. I was afraid he'd have no quality of life, I was afraid he wouldn't know I was his mother and I was afraid I wouldn't have the strength to keep going. I felt guilty for even thinking those things.

I would tell myself, I am strong enough to deal with this, but I don't have to be strong 100% of the time...... It's true when people say, you never realize how strong you are, until being strong is the only option you've got. That being said, no one can be strong 100% of the time. It's ok to cry, and it's ok to feel overwhelmed. Crying reduces stress hormones and you'll feel better for it.

I'd tell myself, no one wants to be in this position...... In the weeks following Max's stroke, I spent a lot of time on the net looking for other families in the same position. In every story I read, parents were saying things like "we wouldn't have him/her any other way". I felt bad for wishing things were different, and I felt guilty because I wanted my son 'unbroken'. I've since realized though, no parent wants life to be this way. There's a point where you accept what's happened and you can find silver linings for the storm clouds. But, that doesn't mean you wouldn't change it if you could. There's nothing wrong with that.

I would tell myself that my heart will break every time I see my baby struggling..... It does get easier but the pain never truly goes away. Watching other kids do things with ease still throttles my heart with astounding ferocity. It's ok to hurt, just so long as it doesn't consume you. Acknowledge the pain but keep moving forward.

I would tell myself, that life isn't fair....... I don't know how many times I've wanted to run into the middle of the road and scream "IT'S NOT FAIR!!! WHY HIM???". Any honest parent will tell you, they have the same moments. It's ok to have these moments, but it's not ok to let them destroy you.

I would tell myself, brain injuries don't magically heal, every achievement takes a lot of hard work...... The experts would tell me we were lucky this happened while Max's brain was still young enough to adapt. No one ever told me how much work would go into every single achievement. Some days, it's so daunting and I feel like throwing everything in. Which brings me to my last point.....

I would tell myself, for every low there's a counterbalancing high..... There's a certain degree of perspective which comes after surviving crapful situations. When you've stood on the edge of a cliff and faced losing everything you've ever loved, you appreciate everything that's truly wonderful about life. You stop sweating the small things and you rejoice in every tiny achievement. It's a perspective that can't be taught and it can't be explained. It's impossible to truly understand it, unless you've lived it.

Everything in life happens for a reason. Whether or not you understand that reason is irrelevant. I intended to go to Italy but my plane landed in Holland instead. Turns out, Holland isn't so bad, just different.

I love you so much beautiful boy


  1. I'm not going to say you're strong, I'm just going to say,

    I have the most profound respect for you.

    Most profound x

  2. Love. I'm in tears as I read because these could so very easily be my words. They are my words, just in my different yet very same world. Damn it all, huh?

  3. This is so well put. I think these words, but it is so great to see them written down, in black and white. Enjoy Holland! I too ended up at a different destination but the sights are pretty good most days!

  4. I can't say that I have been in your shoes but my daughter is living this right now. My grandson was born in February and suffered a stroke at delivery. I was there when they got the news that there was extensive damage to the parts of the brain after an MRI at six days old. Please know that my thoughts go out to you...I can only imagine how hard it is for you to put these thoughts in to words for others who are going through similar things.

    1. I hope this post can help your daughter in processing the emotions she must be experiencing. Give her a hug from me ;)


    Welcome to Life.

  6. Yes! To see what I feel put into words is so soothing. All I really wanted when I realized something was wrong was to keep her. I'm so happy and greatful that she is here with us! I love her so completely And I have felt unbelievably guilty for thinking I wish she wasn't broken and didn't have to struggle for everything that comes easily to the other babies. It's a terrible lonely place and I was pretty sure you weren't allowed to admit you felt that way, so thank you.

    1. I'm so glad you found it helpful. I wish someone would've told me the same things, I'm hoping I can help others, because (like you've said) it's a pretty lonely place x

  7. Faith! I know this blog was written a few months back, but i'm catching up on the story - I was going to mention a wonderful story about a lady who planned a trip to Italy, but the plane landed in Holland - seems you found yourself in that wonderful story also. I cant say i understand at all what your going through - I'm only watching a remarkable woman do her daily thing as if it's normal. It's in the stratosphere, it's so far above normal!
    As a sideliner, all i can say, if i didn't know Max's story, I wouldn't be able to work it out just by looking! He comes across as an everyday, normal toddler going about his day - CONGRATS - your hard endless behind the scenes work is truly paying off!
    I admire you...

  8. Just thankyou,thankyou for sharing sometimes it's a relief to feel not alone