Tuesday, January 10, 2012

serious business

I never got to my phone. I was scared to do it. i think i will work on moving all the video and photos tomorrow. thats a better plan. this has been a stressful day for me. Very emotional i guess. i had a great conversation with another dad who lost his son to Neuroblastoma. its been a few years for him so his prospective is what i was looking for. it helped. a lot actually. it always does. i just have felt so sad and lost today, well actually the past couple. its been 3 weeks and I can not believe it. we did manage to get some things done today. errands. bills. insurance paperwork. all done and satisfied. feels good. we do realize that things keep going and we have to keep up. I took Saoirse off our insurance yesterday. that was hard. it was something concrete.

deep breath.

my mom is doing better. she runs out of energy real fast because her heart isn't functioning up to par. i am worried about her. and my dad for that matter. she is having a defibrillator put in at the end of the month.
i am glad they got to come up and spend time with Saoirse before she passed. it was a good visit.

I did more work on refining my business plan today for the business we are starting. Its fun for me working it out and writing it. right now i am focusing on the marketing strategy. i can only go so far until i get the quote for the initial product launch, which we think we have an investor which will enable us to launch the company and draw in some more investors. but i need that quote first. working on it.  its a great product (s) that Kezia developed and i can't wait to tell everyone about them. Soon. i need to get back to work and it feels good developing this. it also feels good working on ideas for the foundation.

the 18 months of saoirse's life seems like years. its so weird that our life was so full.. busy and eventful. before Saoirse got sick it was busy taking her fun places, teaching her, watching her learn and grow and taking care of Kezia who had been sick already for 4 months. we kept pretty busy.

our life stopped abruptly. it was like poof. gone. it wasn't like when a you power down a boat fully that is going fast. it slows quickly and the back of the boat kinda sinks, the bow rises and eventually you float to a stop. this was like when you forget to untie the boat from the dock.

Saoirse taught me a lot of things. perseverance is one of the top on the list. She always found a way to make it through the tough times. she would always find something to smile at. she was so full of life. and she just kept moving forward as much as she could. No matter how much resistance i get, how difficult things can get starting the business, or dealing with some of the negative non supportive people in our lives.. i will keep moving forward. No more "what if's", no more "I wish i could do that". people choose not to take risks because of their own fears and negativity. mostly negativity because fear can be a great motivator. but there has to come a time when you have to embrace that fear and combat those negative tapes with positive reenforcement and you say "sure its scary, but i have to find a way to make it work and go for it". well, we have reached that point in our lives. 

I miss holding her. every night i go outside and hum to her. I vision myself holding her, rocking her and humming to her. my chest feels warm when i do this. it feels so good to imagine that. feeling her heart beat, feeling her breathing as i hold her. making sure she is comfortable and safe. warm. 

deep breath. 

more tomorrow. 


  1. Mike, it just breaks my heart. But you are right, you can learn from Saoirse; her very positive & driven life force. In a strange kind of way, I hope she gives you both strength when you need it. And you're certainly right about fear. It can keep us from finding out what we can do; from our dreams. Put your blinders on to those 'unsupportive' people, and do what is right for you. I'm so angry that anyone would be anything less than supportive. Not going there.

    Anyway, I'm sure you will have more than one investor putting up their hand now that you've mentioned it. I hope so. I look forward to hearing more about it, and about the plans you are working on for the foundation so that others can use the info on it to raise money for it, in Saoirse's honor.

    Take care. I hope you feel the warmth on your chest tonight while humming. And I hope she visits Kezia soon, I know she needs it.
    In my heart as always

  2. About the pictures/videos in the phone, transfer/forward them to your email service like Yahoo, Gmail, etc to save rather than delete them forever, in case, you are not aware. Or upload them to Facebook group that you two created before for while to leave them there until you decide what to do with them later. Just some suggestion.

    I'm glad you two are working on the project on the disease someday. We will look forward to it.

    Also, sending prayers and healing thoughts to you all and your parents.

  3. Glad you are able to connect with other dads. Hum away :) Hugs.

  4. BTW not sure if you have Verizon but normally you can upload all your videos and pics to your account or remove your phone card and just put it away for now. You can get a new one for cheap.

  5. Glad you guys are working on your plans for the business and foundation. Glad you have found a way to have a special moment with Saoirse each night. Glad talking to other dads helps. Remembering your daughter and sad for the loss - your loss, Kezia's loss, your family's loss, the loss for all that adored her. Prayers for your parents and love to you and Kezia today and every day. Beautifully written post, Mike.

    Courtney Rasey

  6. I hum as well, I guess because my singing is terrible. Keep up the good work Mike,


  7. Very very inspiring. Sending you both love and light tonight!!!!

  8. I'm really glad you're connecting w/other dads.

    Let me know as the business plan develops. Cheers,


  9. Good for you for reaching out to other grieving parents. Not sure if you have posted about this, but beware of people stealing Saoirse's identity. All of my friends who have lost their kids in the past year have had it happen to them. They usually discover it when they go to file their taxes and find that the deceased child has already been claimed by a disgusting impostor.

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