But I Haven’t Been to Holland

I would like to introduce Stacey Dodd as a parent who has submitted the following blog. You may follow her on her blog Minding Thomas.

I had never heard of the well-known essay ‘Welcome to Holland’ until it was mentioned to me via a former work colleague upon finding out how my boy was doing. It was suggested for me to read and I honestly didn’t bother with it. I ended up coming across the essay through a national support network’s booklet, ‘Stories to tell.’ I read it and I could relate to it for sure. I wondered about that last sentence and how we come to a certain point along this journey where we realize that we have to make a decision as to whether or not we want to stop mourning the loss of the dreams we had or hold onto it. I think that this is all very well to say but it’s not that easy is it?

It never really leaves you. The feeling of loss. The eternal grief. The worry you feel when you fear to nod off to sleep at night. Will my boy have a seizure while I sleep? Will I hear him on the monitor? Will he walk? Talk? No one can answer this, not even an MRI or a neurologist. Just wait and see they say. Those words cut deep. Deep where the pain of loss and grief reside. Those words are so easy for them to say. They have to say it because what else can they really say? This is probably why I can’t let go. Because I’m waiting to see? Wait and see what exactly? What my son can or can’t do? I think there comes a point where you do accept that you have no idea what the future is anymore but it doesn’t ever mean it’s okay. It just means, for now, I’ll get through today, and the next day, heck or maybe the next hour. Never week by week.

Yes, you go through ups and downs, but more often so when you are a special needs parent. You become numb with grief having been through the stages of grief over and over. You may spend more time at certain stages of grief, and that I believe depends on you as an individual. We all cope in our own ways. If someone asked me how I’ve coped, I would just say, I got on with it. We do this simply because we have to. We have no other choice. We have to keep pushing on for the sake of our son. We need to be strong for him. I have to be strong for him. He depends on me. I have to keep it together while I can. I can cry later. Sometimes, with all the medical visits, hopsital stays, new treatments or diagnoses you become like a deer in the headlights. Stunned with disbelief or something like that. Some days, you’re wired enough to be on the ready with a trillion questions and energy to research every side effect of a new drug. You give up trying to remember names of nurses, simply because there are so many that you end up meeting. It’s overwhelming. I could go on and on.

So, yes, as the essay says, you end up somewhere unexpected. You did not plan to be there. You have nowhere to turn, maybe to find the exit, a way out. Maybe press ‘rewind’. No. You have no choice. You stay where you’re put and you get on with it the best way you know how which is pretty much anyway you like. It is a lonely place, especially in the beginning when you really need the guidance. Somehow, you find your way about. You do meet some lovely people who help you along your way. You become an ace with the language of special needs. Eventually you find a way to forget what the future was supposed to look like once upon a time and you focus on the ‘cans’. What can I do to help my son? Where can I seek help or guidance? How can I get through a difficult day? What can I do to help others? How can I meet others? What can my son do that I can celebrate? What can I do to make a difference?

Can you do the can can?