Tag Archives: Our miracle boy

There he is!

First some housekeeping.  For the purposes of ease, we’ll refer to our son as Monkey and daughter as Princess. Now…

There he is! (dere e iis, phonic spelling as our daughter says it, or something like that)

So as we are now on our 5th seizure medication in two years, we’re decently pleased. By that of course I mean that it’s a tolerable lesser of evils. Little in the way of side effects and marginally helpful. However, we are at the top of the dosage limits and he will probably out metabolize the drug  soon. Monkey has intractable seizures as a side effect of his brain malformation. That means that they are relatively uncontrolled by the medications.

In the last 8 months or so Monkey has regressed quite a bit develpmentally due in part to increased seizure activity but also because of the last medicine he was on. By Thanksgiving last year he was pretty much just sitting around looking at the floor. He was not engaging his toys or us a whole lot. Prior to this time he had the energy level of a typical three year old. He would army crawl for mobility. He could push a chair across the room, climb up the chair, and then climb onto the table where he had pushed the chair.

I say all of this not dwell on the past. I say it because he is coming back around! Starting to move around again, play with some of his favorite toys and he is making good eye contact. Now, he does not talk. However, for those who read him well and particularly for his mom and I, he is communicating his emotions and feelings. It is a true joy to see him coming back to us. We still have a long way to go before we get back the IMG_0437day when we find him standing up with his face pressed against the glass doors in the middle of our house.

This all may sound sad. I assure you that it is not. We know that we have been given a great gift in world of kids with brain complications and epilepsy.  Some parents never know who their children are behind the drugs and seizures. We were fortunate enough that Monkey had two years of life before we knew his diagnosis or he showed signs other than developmental delays.  We know who our son is. We know when he is missing and not himself. We are in a constant struggle between seizure control and making sure he doesn’t disappear.

So we will continue to hope for better. Hope to balance side effects and seizures. New laws in our state and others nearby offer us hope that maybe cannabis oil can help him. You may have seen some of the success stories for children with severe types of epilepsy that have started this treatment. We are cautiously excited. There is at least an opportunity to pursue, that doesn’t have the physiological side effects of most of the anti-seizure drugs available.

It’s hard to get excited about these things beyond having a decent choice. But it’s also hard not to at least entertain the idea of having our son back. One day we will see his beautiful smile light up the room again. This is our hope and our gift is knowing what it looks like already.

Getting started!

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I was inspired to write a blog because of my son. He has a rare genetic disorder that, at the age of four has left him unable to walk or talk or function at what most would consider a normal developmental level. I searched for successful blogs by dads on the topic of special needs children. While finding some that were, let’s say useful. Most were as sterile and institutional as the overpriced equipment and ‘specialty’ devices that are marketed to us to presumably make our children’s lives easier.

IMG_0157My question was where is the dad that recounts the daily struggle of parenthood in a forward and honest way. Let me be clear, I don’t mean the dad that laments the loss of his hobbies or ability to drink beer and play golf at his whim. I don’t mean the polarized stands on either end of the spectrum. I mean the honest; I participate in every aspect of my child’s life because I am his dad, period. Not because I am trying to relive my youth, make the wealthiest predecessor, or create the next ruler of the world. Not that dads of special needs kids have those as options, but I am also looking for that dad of ‘normal’ kids. I’m looking, but I know where you are. You’re doing what you always do. You love your children and family with everything you are and hope to be. You allow your children to change your lives. So don’t misunderstand my search, as one for something I don’t think exists. I’m just tired of looking around and only seeing the bad, over cultured, under committed, man.

So here I am, writing. Life is hard and challenging. I am not looking for pity. I am looking to provide encouragement and perhaps direction to dads specifically, but people in general, to overcome and share an experience that leaves us searching.

What do we do when life throws us something unexpected?

Well, some crumble, understandably so at that. Some fight what they can’t see. Then what we all should aspire to, to continue. Continue living and helping live. I will not pretend like this is easy, but as parents, as fathers, do we really have a choice? I mean, yes, I could quit. Whatever that means… stop caring for my children and my family? THAT IS RIDICULOUS!

I realize we live in a culture and world where people just give up all the time on lots of things. I’m not talking about soccer practice or violin. I’m talking about the ease with which we quit what is important; marriage, jobs, providing, nurturing, and loving each other.

Really, I want to provide an alternate story. I want dads especially, but people everywhere to provide a better story. The one that most of us live, the one where difficulty arises and we preserve. But better than that, the story where we thrive.