Friday, June 3, 2011

How many times can one heart break in a lifetime...

Lets be clear about one thing. I understand that things are probably not as bad as I feel like they are right now. I am grateful for what I have with KC. I am very aware of how lucky I am that he does as well as he does. But I can simultaneously feel lucky in that way, while I also break inside in other ways.

KC had an appointment today with his Neuro-psychiatrist.

Dr. NP (short for Dr. Neuro-psych) told me at our last visit that while Dr. Neuro may have run out of options to treat the seizures, we have only just begun opening up Dr. NP's bag of tricks. We have many more options. I felt great hearing this! And, as it turned out, the slight med tweak that we did at that appointment bought us a month or so of the best progress we have seen yet with KC. Huge language burst, calmness, etc. All hitting, throwing, and self-injurious behavior ceased. He began coming when called, consistently!! It was nothing short of amazing. My Mom took KC to the Zoo and described it, with tears of joy in her eyes, as feeling like she was taking her typical grandson to the Zoo. He stayed near her with no leash or stroller, waited in line, no meltdowns. It was a beautiful thing.

I knew the whole time that this would not likely last. I tried like hell not to get used to it. I expected some back sliding and felt that I was safely guarding myself. I was wrong. What I did not prepare myself for was for KC to suddenly loose all of his new skills, and behavior and end up further back than he was before we started the risperadol. Pretty much overnight. For the last three weeks I have been wracking my brain trying to understand how this could have happened. I am trying everything I can think of to help him get back on track.

I emailed Dr. NP, who responded with something like "Karen I am sure we can figure out what is going on and find a way to help KC. Come see me". So, I made the appointment! I went in today hoping against hope that he was right. I felt almost desperate. But hopeful.

The first hit I took was the fact that Dr. NP was NOT EVEN IN TODAY. He pawned us off on some doctor I have never even met! We did see the resident prior to seeing Dr. Whoeverthefuckheis. She was kind, and gentle. We discussed some OT options with regards to stimulating KC so that he will not continue to claw at his eyes constantly. We need to do something before he does serious damage to his eyes. As it is, each night his eyes are red, swollen and watery from constant poking. She had a few suggestions about possibly putting KC on an anti-depressant to try to help with behaviors. We talked for quite a while, but she never really said why this happened in the first place, so I asked. Teary eyed, and desperate. "Why is this happening, and how can we keep it from continuing? Her answer? It was in a soft, kind voice:

"Its just the nature of the beast"  She later went on to say "These types of emotional issues with be lifelong for KC. The trick is figuring out how to manage it."

 And it felt like a blow to the chest.

I have been told more times than I would like to remember, that this is just how it is with kids who have IS and autism. And it kills me. Because I have seen him when he is not like this. I get these glimpses of a little boy who does not have to struggle for every fucking thing in his life. I get a view of a little boy who can function well, and can be happy. So why the fuck should I have to accept the fact that this is just how it is?! Its NOT. It can't be. After all these years of fighting, it can't be that this is how he is going to be.

And honestly, I don't think she meant it how I am taking it. I think she meant that he will always struggle with it, but eventually he will figure out how to regulate it better. But she doesn't know for sure. No one does. Maybe it was the kind, almost sad look she gave me when I so desperately asked her how we fix this. Like a doctor telling an unsuspecting patient that their disease is terminal. His isn't, but right now it feels that way to me.

 Many other doctors have told me the opposite...he WILL be ok. He is smart, he has a lot of advantages that other kids in his boat don't have. But what I have been seeing in him lately is scary. He is getting worse. He is falling further and further behind other kids his age. He has never been close anyway, developmentally, but now it is way more obvious. Some behaviors are likened to a 18 month old, some more like a 2 year old. He will be 5 in October. And yea, I get it that in some ways I am lucky to have that. But I got to see him progress SO much, and the sting of seeing it all taken away is so raw.

I think that in some ways, if he was just always worse off, it might be easier. Only in some ways. Obviously in other ways it would be harder. But this here is a special kind of hell. Because I am constantly shown how much better he could be doing, only to have it ripped away. Every. Fucking. Time. I don't know how I can go on hoping, believing. It hurts so bad.

I am terrified. I am scared that this is always how it will be. He will stagnate around 2 years old and never get better. Or, even worse, he will progress and loose it all. Time and time again. What if nothing works? What if he can't ever be independent? Again, typical things with IS kids, but all these years of having the possibility of it not being this way being dangled in front of me. Its cruel. Life can be so fucking cruel sometimes. For him, my sweet baby. His own body betrays him constantly and he has to suffer the consequences. He is such a good person. He doesn't deserve this. And for me. This pain I feel right now, I have felt many times before, but it never gets easier. It does come a lot less often than it used to, so that is good. But it hurts just as bad when it comes. Words (even though I typed a lot of them) don't do justice to how sad and scared I feel right now. I hate it. No one can promise me that he will be ok. So, sometimes I just have to take a long hard look at the fact that things just might not turn out ok. Its a hard thing for a mother to deal with.

This despair I feel right now won't last. I will work through this pain and go back to dealing with things more rationally. I just have to process it in order to let it go. It just hit me hard this time because I really wasn't expecting it. One thing that will never change, is how much I love my son. He is everything that matters to me in this world. I read a quote today that seems so fitting : "This world was never meant for one as beautiful as you"      I Like this quote I dislike this quoteAnd its true. Its not him that wasn't meant for this world, its this world that wasn't meant for him. But he is here, and he's mine. And I will fight until the day I die to give him the life that he so richly deserves.  


Mrs. M said...

Oh Karen, my heart goes out to you and your little man, KC.

Annemarie said...

I totally understand that feeling. Im so sorry

Anonymous said...

Have you seen a DAN! doctor and tried the biomed route?

Karen said...

I have not seen a DAN! doctor specifically. I have eliminated as many toxins from his system as possible at this vaccines, organic food without GMO's, non dyes, etc. He has seizures which have caused brain damage which makes him a tough case. If he has a major regression again I'm sure I will go that route.

Anonymous said...

Karen, I'm Becky wood Barton's mom. I have a FB friend ,Cinnamon Muhlbaure who works for a group that helps wit autisum. It is in Calif. Maybe they have some answers. pat