Monday, August 1, 2016

Staying in Grief

So many people say they understand or want to be there for you, but the truth is, unless you have actually lost a child- you don't understand. Until you've lost a very special needs child that needed you every second of every day, you really don't understand. 

Other people or family members didn't live this life with Kreed. We did. Every second of every day. Other people get to grieve for Kreed and then it's over. Their lives aren't filled with emptiness and heartache. Our grief comes over and over again every day we wake up from sleep and feel the pain all over again. Our grief begins every morning and lasts all day until we fall into unconsciousness where then the grief haunts our dreams. 

So many people then walk out of lives because they don't understand. The soul death we now face, missing our joy and happiness that was Kreed. In the months following a death eventually the texts and calls slow, the check in's go away and life returns to normal for everyone else. But not us. The pain is just as great, if not greater almost three months later. 
We still wake up with a hole in our life. We drive in a car without Kreed, we live in a house without him and have to go about our life with out the single greatest joy of our life. We would gladly take back the sleepless nights, and spending every second with him. To feel him again, touch him, smell him. We live with that hole, no one else does. Not even close.
And we realize no one else realizes the impact his grief still has on us. And we find out who the real people in our lives are, even if we don't respond or can't speak, they keep trying to show us they are there. 

You don't always have to say the right thing or know what to do. Because the reality is no one does. No one could possibly know this pain and know what to do. Our grief is long and deep and keeps us from functioning most days. Most days we are lucky we get up and breathe much less do anything else. 
People, especially close friends and family who dismiss our grief or ignore us or "don't know what to say" so they say nothing and leave us to navigate the grief on our own are only making things harder. They do not understand because they are not living it, they do not know what it feels like to have a child die. To turn their back on us during this confusing, hard, gut wrenching time makes it feel like we not only have lost a child, but them as well. It isn't fair and it certainly doesn't make the pain any easier knowing they have chosen to walk out rather than be there for us or to offer their help or just to let you know that we haven't been forgotten. Our child is gone and there is nothing what so ever we can do to change that, but I guarantee we know who is there for us and who has walked out, hoping if they ignore our grief long enough maybe it'll finally stop and we will get on with our lives and be back to normal. 

So in the end we won't be able to change our child being gone, but we will be able to change who we allow back in our lives. Because those people will eventually try to walk back in once they think the coast is clear, and we should be getting on with our lives and being back to normal, and guess what? The Coast will NEVER be clear. We will have moved on from those people who didn't need us then and who we certainly don't need now because news flash...there is never getting back to normal after a child has died or moving on, there is only learning how to live a new kind of normal and moving on in spite of the pain and grief. We will NEVER be the same. Some people can handle this fact, and some people choose not to. To those people I say goodbye, as you go live your normal life and move on and live your life, and it is too bad you could never understand why that wasn't possible for us. We've been through too much to care anymore, and we've changed too much to notice.

But to the ones that continue to check in, talk to us, send funny pictures to try and put a smile on our face or annoy us with texts or messages- thank you. Even if we don't respond, even if it seems like we ignore everything and everyone, it's the little things that count. Some days we just don't have the energy to say anything or do anything more than breathe or exist. Just know that every day we experience that grief and some days more acutely than others- if we find a piece of him or a memory suddenly comes upon us unexpectedly. Our life is lost right now, unsure of anything we know to do- because we lived for him and every second was dedicated to him happily. He was our joy, our happiness and now we must find a different sort of life. That takes effort and willingness that some days are just too tough to muster. 

Our grief is every second of every day just as our life was for him. And people drop out of people who grieve lives- maybe because they don't understand the depth of pain or they don't know what to do with someone who only knows how to get up and breathe because the pain is so great. Their life goes on, ours do not. But some try no matter what and you figure out who will be there no matter what. Even if you can't understand another's pain or even come close to understanding the depth of it, it's possible to be continue to try and be present in their life. 
Life is short. You don't know what will take you or when that time will be. And when kids are taken from you, you are set adrift without a life raft and most of the time you're drowning in that grief. You never know what will be your could just be someone that sends funny messages or tells you that they are there even if you say nothing. Or the friend that says "shit I can't imagine what your feeling." At least we are seen. The depth of our pain may never been seen or felt, but our grief can, we can. 

We get up and exist every day and thank you to those who acknowledge the fact that we get up and exist and know that we are still here, even if all we can do is breathe. 


  1. My beloved friends. You are part of my life for good. You are stuck with me. I love you both. This is not what was planned, not supposed to be like this. The emptiness left behind is palpable. Know I am loving you the best I know how. C

  2. i have learned from life thru my son as u did thru Kreed, the ones with the most challenges give the most to us who have the least to deal with.....they are our gifts from God and we are so very blessed to have these great teachers of life and how to live it to the full! God bless you <3

  3. My heart truly breaks for you knowing how horribly painful this has to be. I can truly only imagine the grief, and yet I still cannot imagine enough. I do know that I don't believe I would be able to ever stop grieving nor be able to function if I lost a child, yet still must go on and wake up every day feeling the grief all over again. I cannot imagine it getting better. I do hope and pray that somehow it would get easier. My heart hurts for you. I only had the blessing of following Kreed's story for a few years and yet his passing hurts me so very, very much. I grieve for the loss of your beautiful special boy. I learned so much from your family and this truly changed me. My grief will never be anywhere near your own, and that I can't imagine. Please know you are thought of and loved by so many that followed your family's posts and videos. ❤️

  4. Erin and Carie-I hear exactly what you are saying. Trying to figure out why people, especially family members, drop out of your life during a time like this is quite simply because they are selfish, self centered assholes. This is what happened when my son was diagnosed with autism. Family literally stopped calling and walked away and I never let them back in.

    The fact that friends/family can do this to you two when you have lost a child is even more sickening. What you are going through, losing Kreed, is gut wrenching, unfair and horrible and you're right, no one will understand but you but please know that the truly selfless, genuine people will always be there to continually ask how you're doing, acknowledging how truly awful this is for you two day in and day out and will be there no matter what. Good, genuine people will never walk away or even expect a response because it's not about them, it's about you two. Know that there are many people out here who do care and will always want to know how bad the day or night is, how your job is-the good and bad- and so on. Remember, it's about you not them!

  5. I would like to add the following:

    I saw on your facebook page a response from someone with regards to family and friends walking away. Here is a part of what they wrote, "a lot of people can not cope or do not know what to do." Excuse me while I say that is complete and utter bullshit. People who actually believe this are so self absorbed it's mind boggling. It's called stepping outside your comfort zone, figure it out and stop thinking about yourself. The....Oh I can't cope with that couple's grief, oh I don't know what to do so I won't do anything excuse is revolting. You see, anyone who makes an excuse for the selfish assholes who walk away when people need them the most are just as clueless.

    Carie and Erin, you are better off without these people. In a way, be thankful they walked away. They're certainly not worthy of being in your lives any longer anyway with that kind of personality and attitude and you certainly don't need to waste your time or energy on them.

  6. No words except to stay I still check in with you daily and I love the way he is looking at Carie in this pic!

  7. Really understand the pain....let the peace which surpasses all human understanding may guard your mind...

  8. Oh my friend. While no, I don't know the specific grief of losing a child, when my dad died last year mom and I went through similar things. Plenty of people bailed on us that we thought were "family". Open invite to come down to Miami for some R&R. We would be happy to help in any way.

  9. I can only empathize, can never understand, because I have not lost a child, life as you knew it died with Kreed, no it can never be the same all you can do is take one day at a time, and take care of yourselves, peace to you both:)

  10. I don't have the words but I want to send you both love and warmth.

  11. I am crying my eyes out trying to imagine your pain. Losing a child before birth was hard but losing one that you have raised I can't imagine the pain. I too have a child with Autism and knowing the need and sacrifice you give of your self to your baby, your child consumes you. You literally become one and it's almost hard to seperate yourself from them. I know you both felt like more of you went with him than remains here. I would too. But what remains of you both here is still his " voice " and inspiration. He was life. He helped so many truly live and take down the wall. I pray for you to find peace. Live for Kreed. What would Kreed do? No limits!

  12. Thank you for sharing your tragic story. I have been thinking of you. People do care. Hugs to you as you continue on your healing journey.