Crawling out from under my rock

docsmomma · #1 August 2nd, 2011, 12:18 PM

Hi Ladies. I know I know, I been gone a LONG time. I'm not sure how to put it all in words but I will try. but first a update.

I have had a rough few months trying to keep myself out of a depression. Now many would say "your son survived, why be depressed" but thats where it becomes hard to explain. Joey is doing well. He is still engrafted well. He is still battling GVHD, but it seems to be improving some. We have gone from our lives revolving around going to clinic a few times a week to going once a month. Its a big difference. And as grateful as I am, its like I've lost a part of my identity, my purpose.

As for the others, they are doing well as well. David has alot of anger over everything, and Melanie is very clingy at times. its to be expected.

DJ is still without a job. 6 months now... its a scary place to be when you have a kid who's sick and 2 other kids who need stability in their lives as well. Luckily we have a room mate and his son (the one who took care of my kids during transplant) helping out and the room mate has found work so we make ends meet by the skin of our teeth.

Now for me... and please know this is just whats in my heart and my head, please do not take offense as if u are reading this it likely has nothign to do with you.

I am depressed and angry. First of all I am angry over Joey ever getting sick. I am angry that they had a death certificate waiting for him on more than one occasion. That hospitals so willingly gave up on him and were willing to sentence him to a slow painful death instead of try to fight. yes, other hospitals filled the giant shoes of saving him, but that anger remains. I am also angry because I had to find through fire who my friends were. My church turned their backs on us when we needed the love and support the most. We never asked a penny of them. We simply asked for love, prayers, and emotional and spiritual support. And instead the ostracized us. its taken 2 years to get DJ to agree to change churches and we have finally found one that feels right.

I am hurt by how many people avoided us, like Joey's disease was contagious and even talking to me online meant their child might get it. It hurt more than I can ever say. So as he kept getting sick I kept withdrawing. Why keep opening myself up and sharing my fears, my pain, my hopes, and my heartache with people who didn't want to hear that children can and do fight for survival and sometimes its just not enough.

Now as Joey has improved, I have felt like a huge part of who I am, who I have become in the past 2-1/2 yrs is gone. I am my sons only advocate at hospital and appointments. My puspose has been to keep him alive, my identity has been a warrior momma. Now that we've reached the point we are now, I am lost. Yes, I am grateful for where he is, but in a sense it is a loss of identity and purpose when it consumed my life for so long.

I had hoped the Make A Wish trip last month would help me overcome this feeling but in truth, it just brought back the feeling of being lost. Yes, the kids had a blast and it was a wonderful feeling being "normal" for that week. but it was also scary for me. I can't explain it.

But overall I am slowly getting there. The counselor tells me I need to just say how I feel. And to the people I feel this way towards. Its not easy but I am trying. Sometimes I'd rather just hide under my rock and ignore it all. Fact is though I can't. Too many people here on JM mean too much to me. So this time, I will choose where is "safe" where I feel I was supported and where I feel I can support as well.

I ask this of everyone... think before you act or before you don't act. A mother who is celebrating something like a first step is looking for someone to celebrate with, and a mother who is worried over their childs first cold is looking for some support, and a mother who is looking for a simple "we're praying" as they cling to hope that is fleeting need the same thing... friends. Joey's first steps were pushing an IV pole, a milestone I celebrated as I clung to hope that there would be many more. His first cold was spent in the hospital as I held my breath. I celebrated and worried the same as everyone else. I just hope the next time people run into a family who has a less than perfect circumstance, one that would scare any parent, they will find the love and support that so many need and sometimes lose due to circumstances that are scary at best.