Its been a rough couple of days.. no, I take that back. Its been a rough year. And even more so the past couple of months. I find myself spending a lot of time just trying to make sense of what happened. It feels like I am trying to capture something. I just do not know what. I think I know. But I am not sure. I just miss my daughter so bad. I want to hug her. I want to just hold her and rock her to sleep. I want to play with her. I miss her laugh so bad. She had such a deep, real laugh. I know that when she laughed she felt better. I use to get her to laugh a lot. Her laugh was so awesome.
I just can't believe she is gone. yea I know, I know. her spirit is here. but the reality is, she is gone. That is the reality. I can hold her in sprit. I can not hold her in body. Ever again. This is extremely hard to comprehend. Mentally I get "she will always be with you in spirit". Emotionally, I do not. I do not want to discourage people from writing. Please do not take it that way. I will "get it" eventually I am told. I love the comments I get, and even look forward to them.
Deep breath.
I am also trying to make sense of this "re-boot" our life. I think that is the wrong perspective. We need to just re-group.
I just don't get it. I am trying. I really am. And although I do a pretty god job of turing negative into positive, it is hard to do this. very hard.
More updates soon.
Glad to see your still writing! Do yours and kezias ears ever burn? Like when someone is speaking of you? Cause my children and I always talk about you...and everyday that i go to work and i wear my mismatched socks i think of your baby... We live in a smallish town of 60,000 people and i work at the hospital. Everyone on my night rotation knows about you and about NB where we did NOT before....i know you must feel stumped really about how to feel. I can identify with death because i work as a nurse on the heart floor so we deal with death frequently. It is a weird feeling to know someone is here one minute and gone the next. It leaves the mind reeling and almost shell shocked... Yet even in the worst of grief life continues..once your mind has come to accept the finality of your loved ones passing you will begin to live again although it will forever be in a different way...i am excited at the thought that a cure for childhood cancers could be found in my lifetime! I have a very smart 14 year old son who talks of becoming a scientist to find a cure...keep on keeping on and soon you will begin to feel your heartbeat again...love to you all from lufkin texas :)
ReplyDeleteMike, its okay to say what you feel/think. People aren't going to abandon you because of it. Okay, maybe some will, but they likely would be the ones that would anyway, and won't do anything to change this going forward. I like what Monkee Baby says above. You and Kezia...Saoirse, has made a difference and will have an impact on Neuroblastoma and kids cancer. The fundraisers I am running in honor of Saoirse, that I felt compelled to come up with because of you all, will teach 400 children, 800 parents, 78 co-workers and various business owners about kids cancer and, specifically, Neuroblastoma. Probably, nearly none of them would have heard of it before and most would not have become involved on their own. Two events I am running are at an elementary school and have great support and a good chance of expanding to all elementary schools in our city this September and then more schools the following September. It will grow because I won't stop trying. So, not just raising money, raising awareness and teaching the next generation...to make change come. Finally. And I am only one person and I'm sure there are many others like me that have been greatly moved by what happened to Saoirse and you. Change will come, though I know that it doesn't help the absolute mind-bending finality that you are now trying to come to terms with. Because it just doesn't make any sense. But its something.
ReplyDeleteThinking of you both every day.
Audra
Mike, I understand your deep need to hold your daughter again. After our son died, I had the "empty arms" feeling for months and months. I first heard that term at a support group meeting, and it has stuck with me for all these years.
ReplyDeleteThank you for sharing your journey. You and Kezia are in my thoughts/prayers as your walk this difficult path of healing.
Marni
Mike & Kezia,
ReplyDeleteWe are thinking of you.
Psalm 34:18
The LORD is close to the brokenhearted and saves those who are crushed in spirit.
In God there is Hope. He does see your pain, and we are praying for you.
Shawn & Bonita Timmons
I understand how you feel. Of course, having her in spirit and physical are different. To have a loss of child in spirit do help a bit for people who might feel a presence like the heart was touching with warm and tender, but it is not same as having to touch in physical and do something like you do in past. Losing a child is not same as losing a job or something. To overcome with grief of loss your child and move on with your life is not easy to do. Yes, some people do overcome and move on, but that does not mean they don't care about their child, they are still in grief, but they have something to take care in their lives. They have support from their family, friends, and group of people who lost their child due to illness/accident. Individuals have their own approach on how to overcome and move on. Not everyone is same and it really depends on them.
ReplyDeleteYes, it is hard to try to turn what it is from negative to positive, depends on what it is. We do understand how it feels. We will be with you two and support what you all need and get updates on what you two are working on regarding to NB and other things. It is important to take easy and take a step when you all are ready. Meanwhile, prayers and healing thoughts are always with you two.
I still cry for you and for Saoirse. I cry for the pain you are feeling because it has got to be the worst thing in the world to no longer have your child. I'm so sorry!
ReplyDeleteWish there was a 'like' button. I feel it too.
DeleteThanks for continuing to write, Mike. I have a lot of feelings and thoughts about your post, but it's hard to organize them and I don't want to write out something that doesn't make sense. But I think we (humans) want to make sense of things, make sense of our lives and what's happened - and death is just something that's not understandable to me. I think you have to just take care of yourself as best you can, allow yourself some healthy coping mechanisms (distractions like your project, etc.) so you don't have to deal with all the pain at once, and then just let yourself feel the pain that you feel. We (humans) instinctively try to get away from pain, but then we carry it with us and it just eats at us. I think you are doing great with handling this, Mike. Even if "doing great" means feeling crappy a lot of the time right now.
ReplyDeleteShe is here in spirit, Mike. I think the pain of your loss from her not being here physically is just (understandably) too great right now for that to bring much comfort. But she lives on when someone remembers her, when someone who wasn't aware of neuroblastoma before her is advocating to bring awareness and more funding, when someone wears mismatched socks, when you hum to her at night, etc. But, gosh, how sucky that she's ONLY here in spirit - let yourself grieve that without feeling like you have to make a positive out of it right now. You and Kezia are positive, strong, wonderful people - you will get out the other side of this (not saying that you won't change from this or that you won't always miss your daughter - just saying I know you're not going to end up depressed, angry people who do nothing with your life because of it -- that's not you two.). And I think you're right about the rebuilding rather than rebooting - you're taking what you had before, what you've learned/experienced, etc. and rebuilding your life from those pieces and new pieces you get as you learn now. Gosh, you've had this big bomb go off in your life (really lots of bombs it seems) - it takes time to rebuild from that.
It's OK to say this is hard. It's OK to not be able to feel positive all the time. I never want to think about bad stuff - I try to look at the positives and what I do have control over, etc. but I have learned fairly recently that it is important to give yourself some time to feel the crappy feelings about what you can't control so they don't fester and continue to negatively affect you. When I started that, I was so worried that tapping into those feelings would make it to where I was just sad and feeling bad all the time - and the advice I was given is to give yourself a set amount of time to do what you need to do to get some of it out (cry, shout, write anger letters, etc.), then when the time's up do something nice and relaxing to take care of yourself (watch a movie with your spouse, take a bath, read, whatever) and then just keep taking the time to do those little times. I think you probably don't even need that advice - I think you are already doing so well with this. You guys have been through so, so much. I hope someday you can really look back and understand how wonderfully you did for you, your daughter, your wife, your family - and what a great service you did by sharing your story.
OK, so I ended up rambling a whole bunch. I hope some of it made sense a little bit.
With lots of love to you and Kezia today and every day and always remembering Saoirse,
Courtney Rasey
Mike, I forgot to mention...the large school-based awareness/fundraising event that I am holding will involve up to 400 kids, in celebration of Saoirse, appearing 'crazy' for a day at school. They are encouraged to wear mix-matched socks, shoes & pj's, crazy hair,and bright colors. There will be a huge group of kids on Feb 15th, all the way in BC, wearing their celebration of your girl's spirit for everyone to see. And 800 parents will learn of Saoirse and how special she was. I hope that makes you smile, even if just for a minute.
ReplyDeleteAudra
Mike,
ReplyDeleteWhat is the best group to direct funds towards?
I would like to start directing somoe of my monthly tithes that way
CL
Never mind, beatnb.org looks good
ReplyDeleteCL
I loved her laugh. It really was "the birth of Kezia's laugh."
ReplyDelete