Oh Good (or not so good) Grief.

Grief.  It's such an interesting thing.

I guess, somewhere along the line, I skipped a step - which is interesting because Grief really is such a vicious cycling bitch that it seemed really impossible to me that I could have missed a step.

I'm not sure if I "missed" it though or if, maybe, it never was a step in my path to begin with.

A few days ago I was reading online about a topic that comes up often, parents who grieve over what they have lost by having a special needs child.  The hopes, the dreams, the plans... all gone (well, hopefully not gone but definitely altered) - I've seen that before but what I've never noticed is the part about them - the opportunities, the lifestyle, the moments the parents have lost.  The "Oh poor me". I've seen it discussed often, it clearly is a real and valid part of the grief process and I don't want to discount that at all or have anyone think they shouldn't feel that pain.  Clearly you are not alone in experiencing this  (which is good because no one should ever be or feel alone in the grief process) so please realize, you are on the right path for you.

I only wanted one thing in my life - to be a mom.  It never crossed my mind that I might be a mom to a special needs child, or special needs children.  And while I hoped that they would share many of my interests, it was never something that was a priority or something I would push.  I wanted for my children to be them.  To create their dreams, discover their passions.  I wanted to encourage, to foster, to provide opportunities to explore but I never wanted to decide for them.

My parents didn't decide for me, they encouraged and supported me but they didn't set my path for me and their lives didn't depend on my activities.  I had friends who couldn't say the same.  I watched as their parents decided each step of their life, it was more important to the parent than the child if they played a specific sport, was in the band, went to a specific college, studied in a specific field... they lived through their child and on their terms. I see that still today and wonder if these children resent their parents as much as my friends did and if this type of parenting is all the adults know.  I don't have those answers but I know I'm thankful that my parents let me find my path.  I'm thankful for the guidance, support and encouragement I had along the way and for giving me that foundation as a parent. 

I want for my children what my parents wanted from me

• To be happy
• To be responsible
• To be helpful
• To be respectful
• To be a productive member of society

Maybe that's why I never felt like I lost anything and never said, "oh poor me" because I didn't lose my dreams.  My dreams came true on May 4th, 1999 and again on October 17th, 2002.  Fragile X has more than it's share of challenges (way more) but it doesn't take away the fact that I'm a mom and my children can accomplish exactly what I hope for them to, to be happy, responsible, helpful, respectful and productive members of society.  Maybe that's why this step in the grief cycle was never part of my path - or maybe it will hit me later still.

Parker isn't going to be a doctor or a lawyer - but that may not have been his dream even without Fragile X - that doesn't mean he can't still be everything I listed.  And... he will be.  And Miss Allison, well that girl has her future planned out - she is going to open a stable, give riding lessons, and board horses - she'll call it "Horseland" and... I do believe she will.

The problem I'm facing now, the reason I'm avoiding going to bed (because if I don't go to sleep it will slow down how fast tomorrow comes, right?) is because tomorrow I have to start making choices for him, life long choices.  I never wanted to do that. I feel like "that mom" who is choosing for him and I don't want to.  I don't want to choose for him and I don't want him to resent me if I make the wrong choice or be unhappy from my guesses on his future.

Early tomorrow morning we have Parker's transition to high school IEP meeting.  I've been told I need to decide what Parker will do when he grows up.  What career path will we focus on for him.  HERE is where my grief comes in.  This is not at all an "Oh poor me" this is hands down an "Oh poor Parker" moment - again.  I want this choice to be HIS.  He's 13.  THIRTEEN.  Who at 13 knew what job skills they wanted to start working on?  I'm pretty positive that even his typical friends who do believe they know what they want to do when they grow up - will change their mind, at least once, if not repeatedly.  And guess what - they don't have to decide right now.  Shit, they don't have to decide when they are 18 or 22 - they can decide and change their minds as often as they want and still be able to do what they dream of (which, will be great things because they are awesome kids!).  And, I'm sure (God I hope anyway) that opportunities will arise and Parker will have options outside of what I decide tomorrow and over the next couple of years.  But high school for Parker will not be like high school was for me, or will be for his friends.  High school for Parker will be job training.  And these are decisions I'm just not ready to make.


The meeting tomorrow is, honestly, going to be pointless.  I will cry through the entire thing and be numb.  I hear what is being said and their words will float around in my mind uncontrollably until I am ready to face them but that won't be during the meeting tomorrow.  Tomorrow, I will be a shell of my body, a shell filled with tears and emotion.  I will take in everything that was said, Scott and I will talk it all over and we will meet again, and then we will move forward.

And this is how I'm reminded that Grief is a vicious bitch.  My life went from beautiful, smiley and fun to heartbroken, scared and unsure because I'm grieving over a decision my son can't make for himself.  I'm sad for him.  Not for me.  I still get to be his mom.  My dreams came true... now to make his...



To learn more about Fragile X Syndrome please visit the National Fragile X Foundation's website.
*Fragile X is the leading cause of inherited intellectual disability and the leading known genetic cause of Autism.