There’s something so weird and so different and so hurtful that comes with receiving a terminal diagnosis and grieving over your child who is still alive. But at the end of the day, grief is grief. And everyone grieves differently and all kinds of feelings need to be taken into consideration.

We heard the news on Wednesday May 2nd. We saw the genetic doctor and it was confirmed on the 3rd. In the next couple days following, I had set up a Facebook page for him, a YouCaring donations account and signed my sweet boy up for the Make-A-Wish Foundation. I remember naming his page and choosing his profile picture and had to just walk away. That’s all I could do for one day, it was all the strength I had in me. And I know that sometimes all I will be able to do in one day as time passes is a single thing, and that’s okay too. It all happened so fast and was nothing short of a nightmare. I didn’t understand what was happening and I still feel like I can’t wake up from this dream. I can’t believe that it’s even real. No one wants to think about setting this kind of stuff up for their kids. And no one should ever have to. But it does happen and it’s happening in our home, so I’m here to share Owen’s Story with all of you. I keep reminding myself, this is real. This is my life, chosen for me and I can do this. I need to do this, for HIM.

Last night I tucked the kids in and broke down. Hard.
There were times driving in the car with the whole family when I thought for sure that I was going to lose it, but I held it in somehow. To be honest, right now I’m tired of walking around with a smile on my face and ‘being positive’ when all I feel is broken inside. I’m hurting. This freaking sucks.

Most days I’ve been just numb, I’ve just been ‘okay,’ just living. But on this day… I’m breaking.

I am fine one minute and then I break down the next with no reason at all. Feelings and emotions are all built up inside of me and I can’t help or control any of it. It’s like a bottle of soda that hasn’t been opened, all shaken up with the lid on so tight, ready to explode at any minute.

Everything people say, I take the wrong way. “Be positive and enjoy everyday you have with him” sounds like crap to me. I’m a very positive person 98% of the time in my life and of course I’m going to enjoy every single day with him that I have, I always have. Don’t you do the same with your children? …But then, see? Rude comments in my head like this backfire when I know that they don’t mean for it to be taken that way, nor am I even the kind of person to think negatively this way. I’m just angry a bit. I can’t help it. I don’t consider myself to be even close to an angry person, so I hate how all of this makes me feel as an individual, someone that I’m not. It’s all part of the process, I know. But I’m ready for it to be over now and it’s sadly only begun. It will all come in waves and I know that it honestly, will never really end.

So, I know it’s not what people mean to say, but to me, it’s just not making sense. It seems like it’s just not what I want to hear. It’s not making things any better. And then I feel there are people that I want to hear from, but don’t. And I know there are people that don’t know how to comfort or know what they should say, and that’s fine too. I’m just explaining that it’s a very weird place to be in. I’ve also realized that I don’t know how to take other’s condolences. I appreciate them so, so much, and I don’t want them to go away, because I do read them. And then I reread them. But I don’t know how to respond back. Again, this all just doesn’t seem real. I feel numb.

At this point, as a mama, I need a hug. I need someone to ask me how I’M doing. How I’M feeling. But again, at the same time, I don’t need anyone to ask me anything or say anything. It’s confusing, you guys, and truly frustrating. I feel sick one minute and then I feel positive. I feel numb most of the time right now but I still feel hopeful. I feel alone, but not alone at all and truly feel unconditionally loved by others surrounding me. I feel like I’ve done everything that I can to get us here, but then I feel like there is still something more that I can do. I’m angry but I’m content. I’m at peace but I’m uncomfortable.

I’ve been having the feeling that all I want to do is hide. I don’t really want to talk to people. I don’t really enjoy the feeling of people looking at me, because then I have to wonder if they know. I don’t want people to feel bad for me, or us, I just want them to know how I’m feeling, and right now, I’m just feeling freaking confused. I don’t want to think about getting into the position of trying to carry on a conversation because if someone says, ‘Hi! How have you been?’ or ‘How are you doing today?’ In their defense, maybe they don’t know anything of what’s going on, when I want to just be like, “Actually today SUCKS,” or “I’ve been WAY better actually…” That’s when the anger part takes over and I don’t want that. It’s not me at all, friends. I’d rather try to just avoid it at all costs, wouldn’t you?

So, you know, being in a bubble sounds kind of good right now, at least for just a little while. But then I remembered that hiding won’t help. Not even just a little bit. Of course there will be days where I won’t want to chat, and that’s okay. But to just go into hiding and ignore the life we are still living, that won’t help one bit. I won’t allow that to happen. If I can sit here and tell our story and be raw with people in my most vulnerable state, than that’s when my strength and my help for others are going to shine through even more.

I feel alone. But I know that I’m not alone. There are other families going through this too, ones that we’ve already been introduced too, and some that have even already reached out to us. We all need to lean on each other in the hard times, no matter the circumstances. Only we have the power to spread the power, spread the love and share our experiences. It’s ‘all we can do.’ And in the end, it really is a whole lot.

I want to encourage all of you to never give up.
Let me say it again. Never. Give. Up.
Keep going.

You know in your gut if you have your answer or if you don’t and I’ve known since day one there was still more, there is something still missing, things that were not making sense or adding up, that ‘it can’t end here’ kind of feeling. If your child needs speech help, GET IT. If they need physical therapy, GET IT. Anything, especially when they are young. It’s only going to HELP THEIR FUTURE no matter how little of help they may need. I just think back to the beginning, of when our original doctor wasn’t moving forward with anything, and just wanted him to grow at his own pace… What in the world? What would have happened when he gets older and starts regressing and passes without anyone knowing what happened? Could you imagine? Nope.

You are your child’s advocate.
You are their biggest support and their path of guidance.
Do it all for them and the answers you will need will come pouring in.

Through it all, every single day, on the hardest of days and the days when you feel the most exhausted, please, never ever give up.