Thursday, August 7, 2014

The journey of disability

Recently it was made pretty clear to me that I am not exactly at the point in my life journey that I thought I was, particularly in the special needs world.  This should not have come as much of a shock to me as we are 11 years into our fragile x  diagnosis – yet it did.  It left me reflecting on where I was, what I wish I knew and where I am headed.

To my surprise, I am no longer that new mom full of hope and conviction that my son will overcome every aspect of his disability. That’s not to say I do not have hope and conviction, I have plenty and some to share – it’s to say I am much more grounded with the reality of what is our life and his future.   This surprised me as many days I still feel like a new mom as we tackle new obstacles in our journey of life.  But, I’m not. Experiences are new but my perspective is significantly deeper (Thank you Cindi).

I realized that at some point in this journey I crossed a bridge to another side.  I’m no longer that young mom convinced there will be a cure for my son and he will marry and have children one day.  I accepted a long time ago that Parker was “too old” for a “cure”.  A “cure” would be for someone not yet born… for Allison’s children… but not for Parker.  He had become too old.  I do still believe it’s possible and will be seen at one point.  What I anticipate for Parker is an “effective treatment”, while not a “cure” something that will significantly improve his life.  I saw a glimpse of that once with the Arbaclofen.  I know it’s possible and we will see it again.  I’m just not so sure when and understanding it’s going to be awhile with the recent setbacks in our drug trials.

On this side of the journey, I focus less on the “what if’s” and the “he’ll do it even if no one else ever has” and focus more on the day to day skills he will need to be independent.  I focus on what’s available (or not at all existent) in our community and how to use or bring in those services to better serve his needs as he reaches his independence. 

I have went from that mom who told the very poorly “educated” geneticist that Parker will “live with his mom forever” to knowing the importance of his independence and creating a plan and time line to see that through.  I’ve accepted I won’t live forever and it’s certainly not fair to keep Parker with me until I am no longer here…. It’s not fair to him.  I need to see him thriving on his own, working in the community, surrounded by friends, happily independent as possible for him while I am still here so I know that when I am no longer on this earth – he’s going to be ok.  He’s going to be thriving on his own with the appropriate supports in place.

I’ve accepted the reality that I likely need him way more than he needs me.  Creating his independence and moving him along by his 25th birthday will likely be the hardest and scariest thing I have done to date, because I count on him as much as he counts on me.  I know it will be what is best for us both, even if we struggle through parts of it.  I would rather we struggle through it together than have him in a situation where as a grown adult I am all he knows and then one day I am gone and he will be forced to start new alone.  I can’t do that to him.  Therefore… the plan.

I anticipate when that happens, I will cross another bridge of this journey.  Like the one I have already crossed, others before me have successfully made it to the other side and continue to thrive.  In time, I will too and hope that the paths I have taken are a bit more cleared off for those following behind me.

It’s in the path clearing part of the journey that I have been reflecting on that has brought me to write tonight.  The reflections of what I didn't know that I’d love for those in the earlier stages of this journey to understand.  Maybe someone told them to me and I was too consumed with untangling the web of what this path was to hear them, maybe some who read this will be in that spot too, but hopefully these words will hold tight with some and bring comfort as you take this journey you did not plan.

I’m sure there is more, I will likely add to this list over time but in my late night ramblings these are resounding through my mind.

There are going to be times when you feel lost and like everything is over your head while trying to understand the diagnosis, sometimes hours, sometimes days, sometimes weeks…  and that is ok.  In fact it’s normal.  Even if you are a doctor who specializes in your child’s disability – this is your child, which is a game changer.  You will figure it out. Do not give up. Keep reading, keep asking questions, keep pushing ahead.  You’ll get it and understand it better than many of the professionals you will meet. You’ll become the expert and share your knowledge.  You need to.  This is important.  (and then something new will come along but no worries, you’ll eventually get that too!)

There are going to be days when you want to bury your head in the sand… that is ok too.  Just don’t stay there.  There is nothing worse than sand in places it doesn't belong.  Dip your head, enjoy the quiet, regroup and resurface stronger.

You are going to lose friends…that one person who was the first friend to come hold your beautiful new bundle of joy? That one person who you are convinced will be there forever?  You’re going to lose some who you least expect.  It’s inevitable.  Some will slowly fade away while others will boldly tell you the diagnosis and disability is too much for them to deal with/watch you go through.  Years will pass, you will see them at the grocery store and instantly remember the times you spent laughing and sharing plans for the future and hurt. Part of you will only see them through the eyes of a stranger as you cannot comprehend how they moved on and away.   You will be ok.

You are going to find friends in the least likely of people… that casual acquaintance you kind of knew from your child’s pre-school or from church, you will discover an amazing gift of understanding, support and friendship in them that will be life changing to you.  You will wonder how so much time passed as acquaintances and appreciate their friendship in a new light. You will treasure these people the most.

You are going to meet people in this journey who walk in your shoes… It will not matter if you are minutes or miles apart, there will be an understanding between you that those on the outside just won’t understand, an unbreakable common bond that will forever hold you together in a new family… and they will complete you.

You will have (many, actually) a friend who is the parent  of a typical child look at you and say “I don’t know how you do it, you are a super mom/dad” … You will learn to juggle therapies and IEP meetings becoming your child’s biggest advocate while quickly catching vomit in your hands without blinking and thinking nothing of wiping the bottom of your almost adult child while keeping a household moving along, working, fundraising, raising awareness and attempting to keep your sanity. And… it’s true… you are super human.

You will look at your friends who are parents of typical children and say “I don’t know how you do it, you are a super mom/dad:… as they run their child to multiple sports practices and events, chorus, band, every school activity imaginable and juggle homework, keeping a household, working, volunteering  and never breaking a sweat…. And it’s true… they are super human.

You will learn the real feeling of pain when your child is excluded or asks you why they are different… you will also discover your bravery and pass it along to them, sometimes sharing tears and other times holding them back until you are alone.  They will feel your strength even when you believe you are weak and grow from it.

You will learn every trick from every parent and specialist for every imaginable situation… and 99% of the time you will apply them successfully but that 1% of the time that you don’t you will have a hard time forgiving yourself for.  Remember, you are human.  We make mistakes, we don’t always get it right, we learn from these moments.  We learn to forgive ourselves and move forward so when it happens again, because it will, we will handle the situation differently. You will accept you are human.

In your effort to learn and understand, you will join every online support forum you can find… and discover some are more harmful than good.  Sometimes you need to step away, regroup and come back.  You will learn that even in this new world where you are all walking down the same path, the shoes are different sizes and we all walk differently.  Some people will not get past the anger.  Some people will have far more complications and you will feel guilty for having it “so good” and some will lift you up and help you fly.  You will need to find that balance and not let this consume you.  Balance is important.

Something bad will happen and, while not directly to you, it will greatly impact your life and you will need to find your peace… in the disability world bad things happen and become easy to dwell on.  Children are abused, neglected and sometimes even die – both at the hands of others and unexpectedly by natural causes.  You have to keep a level of distance between yourself and the situation or it will consume you.  You will learn to use these times to advocate, educate and most of all appreciate.  You will find your balance.

You will read and hear every worst case scenario known to the world…and it will be important to stop.  You need to find that safe place of positive, through inspirational families and their stories, through friends, family and strangers who are willing to open up.  You will sometimes need that one safe place just to celebrate the good, every inch stone that we treasure and in the company of those who get it.  When that place doesn't exist… you will create it.  (Like the Fantastically Fragile X Brag Room… our happy place.)

You will meet the most amazing people you never knew existed and they will become your closest friends… parents, teachers, parapro’s, therapists, specialists, researchers… you will need each other and discover the importance of those you can simply look at and begin to laugh because they already get it.  They will be the people who help your child succeed, who push with you the limits of what is possible and cry tears of joy and pride with each accomplishment.  You will embrace them.

You will discover that more days than not, your hair is perfectly acceptable pulled back in a pony tail and even when you are insistent it will be down and maybe even curled (hahaha) by the end of the day it will be pulled back and out of your face… and you will be perfectly fine with this choice of style no matter where you are going and validate it’s appropriateness.

You will lose yourself… don’t let it be forever.  You will put everything before your needs.  You will take amazing care of everyone but yourself.  Stop and change that.  It will be important that you care for your mind, body and soul with the same passion and attention you do for your child.  You won’t do this for you, so do it for your child who needs you.  Learn to take time outs, a walk, a drink with a friend, exercise, yoga, a time out sitting under the stars in the back yard before going to bed… find what you can make work and take care of you.  This will be one of the hardest things you do.

You will one day be in a better place, happy, content, life will be good… and then your child’s peers will start playing sports, getting their driver’s license, going to prom, graduating… and you will slip back into a place of sadness and grief.  You will mourn what isn't, appreciate what is and move forward again.  You will learn to accept this is a cycle that never ends and starts over when you least expect it.  You will find the balance to help as you travel on this journey. You will understand the cycle.

You will appreciate the things in life your friends with typical children don’t even realize happen…. We (Paula, Melissa and I) call them inch stones.  While everyone celebrates milestones in life, the inch stones are often over looked.  Without the inch stones, milestones are never reached.  While we often take longer to reach the milestones, we embrace the inch stones with every ounce of who we are and celebrate them! From zipping zippers, to pulling up pants, to blowing a nose… we see life in a way not everyone does.  Time slows down for us, take advantage of that to appreciate the incredible things that happen each day, no matter if they happen when your child is 1, 5, 15 or 45… celebrate when they happen because life should be a celebration of accomplishments.

You will be ok… really.  You will.  You may struggle with anxiety, depression and thoughts of wiping out your entire IEP team but in the end… you are going to be ok.  In fact, you’ll be better than ok.  You are going to be amazing.

Remember, no matter your diagnosis you are not on this journey alone...  Reach out to those on it, they are always there for you.  There is amazing strength from being around others who live with the same challenges, fears, frustrations and successes.  Embrace those.  Find the support group, find the foundation, find those on your path and embrace them.  This journey is so much easier when traveled together than alone – and you are not alone!

This journey isn't one any of us chose but it’s the one we are on.  It will reshape our lives in ways we can’t even imagine or predict but we can embrace.  In this journey where so much will feel out of our control, it’s important to remember just how much still is in our control.  Take time to really take in the laughter as much as you take in the knowledge.  Take time to take care of yourself as much as you take care of the world around you. Take time to hope as much as you inspire.  Take time to build friendships more than you build walls.  Take time.  We only get to take this journey once and it goes so incredibly fast… stop and take time.  Just time to take it all in before you know it you will have crossed one of the many bridges into a new part of the journey, don’t let it happen without appreciating the steps you are taking today.


  1. This is beautiful, Holly. You are a remarkable mom, and an inspiration to me (and to many others!!). Thank you for your candor, and sensitivity, and poetry......This blog entry has given me insight into the fantastic wonders of your life and your wisdom. God bless.

  2. Thank you very much, LeeAnn, I greatly appreciate your kind words. They really mean a lot to me.

  3. Thank you for the encouraging words, Holly. Having a disability is really a tough journey. But as long as there are people who support you in your struggles, you should not lose hope and feel dejected. Disability might limit your physical capabilities, but it will never define you as a person.

    Jason Hayes @ DECORM