Just a mom...Facing up to PTSD

I was approached today and asked if I would talk about PTSD in caretakers of children with Rare Diseases. Would I mind or was it too personal or too difficult? Immediately, I said 'yes, I would do so' quite willingly even though doing so is a bad trigger and I know ahead that I will have to stop and walk away from this then come back to try and explain some more.

Yes, It is very personal, quite personal in fact. And as with all things in my life it is difficult. Yet, here I am typing furiously away and here you are reading.

Quite often when one hears the term PTSD one thinks of combat veterans. Well I can't compare myself with that as I've never been in the military. But I am fighting. I am fighting for my son, I am fighting for his childhood. I am fighting so that others after me don't have to feel they way I've felt. My enemy is my son's diagnosis of a rare genetic condition.  I will try to make this as general as possible because I think that many parents may also be dealing with PTSD and perhaps they will be able to relate. 

My son was born in 08. It was wonderful. but.....

there were milestones missed

there were months without even sleeping in a bed because I would fall asleep sitting in the rocking chair holding my son. 

there were tears and

there were more tears and 

there was heartache

Then there was a diagnosis. 

Life changed. 

I had no control of this change. there was no help for me. there were no answers. 

I was lost.hurt.alone.broken. there were more tears and bitter heartache as I had not known of before

I mourned.

*WHEW

do you see that?All that I just wrote, I was just transported back in time...

can you see the pain? 

can you feel my anguish? 

I assure you...It's still there 

When 'they' say time heals all wounds.....THEY lie......It never goes away, it changes and yes, sometimes you can learn how to deal with it....but, no. it is still there.

Now. please bare with me as I ramble a bit and skip some years. 

I got my son's diagnosis just before he was 2 years old. I was given case studies of clinical research done on mice and a trial study done in Europe somewhere. I was not given the name of a national support group or it's website because ....one does not exist. I saw this doctor a total of 3 times, then never again. He changed my life.. dropped on a deserted island to fend for myself. alone.( I find this unacceptable now and I want to help others) I want to go back in time and comfort that broken heart-ed mom, I want to go back and tell the doctor to refer her to someone she can lean on...anyone...

*WHEW

I don't think I can keep writing this. I quit.

I'm back..where was I?? Oh, yes I am hounded by these Questions:

what can I do? what can I say? how do I keep going? what? what? how?

I'm just a mom and there is little I can do and so I do...

I continue because there is no other option.

Oh, yes I have to stop sometimes and breathe. I meditate. I force my body to relax. I will the tornado in my mind to rest. 

No, even though I joke about it ...I am not a superhero mom.

I am a single parent. I have no partner to help me I have very few family members that are even able to spend a few moment to listen, much less help physically or mentally. I am grateful for the family I do have make no mistake about that and blessed to have some wonderful friends that have stepped up and become family. But when it comes to this battle....

I am just a mom. I am a mom fighting. I am a mom fighting for her son, I am a mom fighting for her son's childhood. I am a mom fighting so that others like me don't have to feel they way I've felt. My enemy is a diagnosis of a rare genetic condition. I give and I give and I give until I am a beaten limp mess and cannot even shed a single tear more. and then I have to 'lift myself up' and 'care for myself' and 'do' so that I can start again tomorrow.

*WHEW

I almost had to quit again but I'm plowing on...yay me!

See that? that is one of those 'Little things in life that are HUGE' 

I use that so much I made my own motto.."Life is good even when times are tough"

I say it to myself mostly when I can no longer see the 'good' it is my reminder that there is good and that I just have to search for it, often even making it happen. 

Let me enjoy each small joy, let me enjoy each "huge" little event ...

let me hear my son laugh so much and so hard and with such joy that tears run down our faces and he squeals... 

Do I shy away from things that trigger me? oh yea, you bet I do...sometimes but not always. I have been known to burst into tears in the middle of a store. I have been known to stand out in the rain putting my son's wheelchair in the trunk swearing that would make a drunken sailor blush. I have gotten up many times in the middle of a peaceful sleep just to see if my child is breathing only to break down in relief because he was fine. I have written up informative speeches to take to doctors visits because I know more about my son's disease then they do. I have had medical students squeeze into our exam room just to learn what I had to say. There is no cure. There is no 'hope' in sight. Yet...on we go.

Why??

Because the 'end' that is insight....is not THE END that I want to face...yet...not... yet... please...