Gone

Gone worry, anxiety, fear’s ache.

Gone healing’s hope and triumph’s take.

Gone past struggles, deceptive pain.

Gone future goals and dreams unattained.

Gone parents' dreams for their son.

Gone conclusion, ambitions undone.

Gone big brother to protect and defend.

Gone uncle, cousin, grandson, nephew, friend.

Gone potential white walk down the aisle,

New daughter to love, unborn grandchild.

Gone wholeness of a heart now forever blue.

Gone every certainty understood to be true.

Gone laughter, humor, devilish smile.

Gone ours too, for a long while.

Gone suffering, gone affliction, gone anguish, gone fight.

Gone promise, gone aspiration, gone existence, gone light.

Gone days without tears.

Gone

Gone

Gone…

Because you are gone…

And we are still here.

Brandon’s Mom

Connie Sorman

In memory: Brandon Roat, 2.2.1992 ~ 2.13.2017

Before There Was You

There are many twists and turns in life; aspects which seemingly have nothing what-so-ever to do with who we are in every other regard. The truth is that all parts of our lives are what create our identities and all experiences shape us. If someone had told me, at 25, that addiction would one day shatter my world, I wouldn't have believed them. I'd have stared at them in horror.  If they would have told me that a genetic disorder, which I couldn't even pronounce, would become a focus in my life, I'm not sure I would have fully understood what that meant at that moment in time.

When I became a brand new mother at the age of 26, life, as I'd known it previously, was no longer. It was a wonderful new normal to be a mother and have a family and it thoroughly changed me for the better.  The maternal instinct was strong within me throughout my life and this one event completed me. I was blessed to be given this precious gift of motherhood subsequently, three more times.

When they place that newborn on your chest in the delivery room, they don't tell you about all of the possibilities to come. They don't warn you about heartache. I suppose that would not be the time and place for that. Truthfully, nobody ever prepares you for the worst; those are just events that happen to us and we are forced to face them, unprepared, when they do.

As most mothers do, I had hopes and dreams for my first-born child, for all of my children, but different hopes and different dreams for each of them. This child would go far in life and he would conquer the world with his gifts and talents!  Turns out that his path was different than what I'd imagined it would be. Coming to terms with that and fully accepting it will mean that I have another new normal to embrace...that, for me, is the most difficult part of grief of all.

I wrote this poem for my first son and for all of the parents (most especially the mothers), who are forced to live with a new normal that they were not prepared for in advance. If you replace some of the words, the poem is relevant to many situations that did not turn out the way you'd expected them to. I've faced this reality twice, with both of my sons; one with addiction and the other with neurofibromatosis.

Before there was you,

I never knew,

That love could be so selfless and so pure.

The fierce protector inside me; knowing no bounds for the lengths I could go to keep you safe.

That being your Mommy would give me infinite purpose; nothing I'd been, nothing I'd done before, had any meaning at all.

The capacity in my heart to treasure another person's life, above all others, unconditionally.

Before there was you,

I never knew,

That pride could taste of the sweetest fruit, yet prevent me the ability to swallow.

That my breath could be stolen by your every accomplishment and the wind knocked from my sails by your every defeat.

That my melting point consisted of your smile and your frown equally, yet without similarity.

Before there was you,

I never knew,

How intertwined joy and sorrow could be.

That my love would not be enough to save you from your demons.

That immense promise lay in your courage and complete despair in your choices.

That my ability to hold tenaciously to hope would arise from you losing yours.

That I could want more for you than you seemed to want for yourself.

Before there was you,

I never knew,

That someone who was so deeply loved could be devoured by perceived pain.

That your mind could be ravaged so completely by a substance that you could no longer recall my love.

Before there was you,

I never knew,

The agony in helplessness and the conflict of being unable to shield my child.

The many sleepless nights of unimagined fear; unaware if you were cold, hungry, safe or…alive.

The anguish and heartbreak that comes with having to refuse your child's appeals.

The compelling necessity for belief in a higher power.

I never knew,

That I could survive the horror of your addiction, when you would not.

That the gaping hole, left by losing you, would prevent me from ever again living life like the one I knew,

Before there was you.

~Connie Sorman

Dedicated to my B-loved son, Brandon, 2/2/1992 to 2/13/2017

Brandon Stephen Roat, Obituary and Eulogy: http://nfsaid.blogspot.com/p/brandon-stephen-roats-memory-page.html

Things You Might Be Surprised to Know About Me – The Activist Mom

It is that time of year again, Walk season. Every year, just as the summer winds down, days start getting a little shorter, nights get cooler and everyone else is buying new shoes, pencils and backpacks to go back to school, I enter Walk-mode.

Walk-mode has varied for me over the years. I’ve evolved from the passionate, yet sometimes irrational lady that people would cross the street to avoid because I was likely to assault them with a contribution shakedown. In those days, I was pounding the pavement night and day searching out raffle prizes, sponsorships, volunteers to man the food table, food donations, media contacts, and anyone in the business of entertaining children with balloons, face paint or crafts.  I was a walk organizer. In those days, I was also a pursuer of funds, although my focus on this was less intense. Without which, my walk would be a fantastic community building event, also very important in and of itself, but it would not be responsible for putting a drug in a clinical trial or for funding a grant to provide much-needed research.

These days, due to other charitable responsibilities that I’ve assumed over time, I am mostly the former-the pursuer. This often puts me in the awkward position of feeling unpopular and obtrusive.

If you have met me, or someone else like me; the person you’ve exclaimed to be a Super Mom, a go-getter, someone of extraordinary strength and abilities…You may be surprised to know these things about me:

1.    I’m shy at heart. I was born a shy person. I was the quiet kid in school who often didn’t raise her hand or want to be noticed.  Focused attention was painful for me. This all changed when my child was diagnosed. It didn’t happen in a flash of profound awareness. It happened gradually. As my child had more struggles to face, more obstacles to overcome, I became more vocal.  Little by little, I emerged as the person you see doing television news interviews, visiting my Senator’s offices on the Hill or standing on a podium addressing a crowd of people, all the while praying that someone will hear the terror in my voice, will know the sincerity of my message. I may make it look easy, but it is still grueling.

2.    Asking you to give your hard earned money to my cause is agonizing. I know how you labor for your money. I know how tight a family budget can be (insurance helps, but it doesn’t cover a lot of our son’s medical needs). I know you have other requests, from other equally loved friends and family members, whose causes are also important.  Please know that when I ask, I don’t do so lightly. It takes a sizeable amount of humility and a healthy dose of desperation to send you that email or tag your name in a social media post.  I hate doing it.

3.    Asking for your time is even worse. We are all busy. Time is a precious commodity. I worked and raised kids, I know. Requesting that you put aside your own family, your obligations and your billable hours, gives me hives. If I ask you to join our walk team, sign up for an event in your area, or volunteer at one…I will be chugging Benadryl- no joke.

4.    I’m not as calm, composed and pulled together as you may think I am. I am really just a mess with decent organizational skills that I was forced to adopt.  My knees shake when I have to speak in front of people. I practice my spiel in front of the mirror before a big meeting. I am usually juggling priorities and trying to catch my breath just like everyone else, and I get really stressed out, but I work painstakingly at making it look easy so that I can convey my message with confidence.

5.    I would change it all in a heartbeat. Usually, the author of a column such as this would say that despite the hardships, heartache, and strife, she wouldn’t change a thing. I am trying to be exceptionally honest here and I am telling you that I would change everything if given the chance to take this diagnosis out of the equation and give my child a level playing field in life. That isn’t something that is easy for me to admit. You probably think that my cause is my identity and who would I be without it? Honestly, I don’t know who I would be because that wasn’t my journey in this life. Maybe I would still be the shy, disorganized hive-free girl of my youth, maybe not.

It also means that I would not have met the incredible and inspirational people I’ve come to know along this path. These are the people who I now consider as beloved as my own family.  We understand one another better than anyone else in our lives does, including our own parents. We have supported one another in good news and have held hands and wiped each other’s tears with the bad. They are the people who will understand these words more impactfully than anyone else will. Yet, even though changing everything would include eliminating these precious relationships from my life, I would do that. Because doing so would impact my son’s ability to play sports, ride a bicycle, go on dates, be invited to parties, kiss a girl, hang out with friends in the casual way that other teens take for granted, not have a roster of specialists, need regular MRIs, an IEP, medication and the need for me, his Mom, to step far outside that zone of comfort on a regular basis to be the person who feels a need, while in Walk-mode, to make disclosures like this one.

I hope that knowing these things about me makes it a little easier for you to tolerate my seemingly endless capacity for badgering. With any luck, you won’t immediately skim over my social media pleas, won’t cross the street when you see me coming or avoid my emails and calls. Instead, maybe you will respond. Maybe you will be honest with me too and just tell me that it’s not a good time, that you appreciate my discomfort, would like to help me with my cause, but that you aren’t able. Or maybe now you will understand that even making a small donation will speak volumes and will make it all worthwhile for me. That when you respond and you don’t avoid and when you show even an inkling of support, I can get up tomorrow morning, smile at my son and put my big girl panties back on to face another day outside of my comfort zone.