It’s “National Lighthouse Day”

Funny that I just mentioned lighthouses in my prior post about the Coast Guard.

My brain is really fuzzy today so I probably won’t make a lot of sense. Last night was probably the worst sleep I’ve had in a long time. I was starting to doze off after Ben’s platelet transfusion when the nurses came in to do the nasal wash. It was a completely unpleasant experience – mostly for Ben – but I have to admit that I was not fond of holding Ben’s arms and legs down with all the strength that I had while the nurses shot water up his nose and tried to suction out boogers. Hearing those cries again, his pleas for us to stop torturing him, well, I’m going to need some therapy.

Once I did fall asleep it was fitful. I kept waking up with visions of bloody noses and having a carton of broken eggs at Target. I have an explanation for the bloody noses dream, but am completely curious about the broken eggs at Target. And there was only one checkout line. And it was self-service. There were no employees to help with my broken eggs. Plenty of people milling about in the traditional Red Shirted Target Uniforms, but absolutely no assistance. And a line of vicious customers yelling at me to hurry up. They didn’t care about my broken eggs. Nobody cared.

I could use a lighthouse about now. Something to shine a beacon of light to guide me through all this mess. Lead me home. Bring me safely into the harbor. Help me avoid the angry rocks that are trying to break through my hull and drown me. I’m sinking. Where’s my lighthouse? Spiritually, I’m completely lost. And I’m afraid I’m not going to find my way back.

The only attribute of a lighthouse I have right now is the horrendous sound I make when I blow my nose in the morning. It could rival any foghorn out there. For being a fairly small person I can make a tremendous sound with just my nose. It’s quite embarrassing actually. And now that we’re back in the hospital setting with no privacy, well, the entire floor can hear my foghorn in the morning. Calling out to them. “EEEEEEEE-OOOGH” But I have nothing to offer my fellow parents living this nightmare with me. No guidance. No support. No answers. Helpless in all aspects. Sinking. Flailing. Pasting on our smiles for our children to guide them through but being empty inside.

I guess that’s something. I can be a lighthouse for Ben. But I think I need a new light bulb. My foghorn, however, is in tip-top shape.

More tomorrow. 🙂

Join the Conversation


  1. I was trying to post on Ben’s site and have been unable so I thought I would try here. I am so sorry Ben’s having such a rough time. But I did want him to know that people all over-even strangers are thinking of him and his family. I pray alot, for strenght for you and healing for Ben. Hopefully you can re-charge the light in your “lighthouse” a little over the week-end.
    Leslie Kerr
    Kansas City


  2. I feel your pain in your writing and I am so sorry that you all have to go through all of this again.

    I lost what little faith i had when I saw a sweet little 6 year old (not mine) die from cancer and the priest said that God had a special plan for her. If he had a plan a compassionate God would not have let her suffer such intense pain and humiliation in her death. If that was what God had to offer I was not buying.

    The light you need is in the love and support of those arround you. They are the light you need let them be that light. I send you warm thoughts to surround you and Ben in this dark time. Know that many who you will never meet care and surround you with loving healing thoughts or prayers if that works for them.

    Also – I don’t know if this helps but I made a rule sometime after treatment began to never ever hold my daughter down for any proceedure. IF they wanted her held down they better bring in re-enforcements. I would be right there holding her hand and trying to calm her but I would not ever do the holding. It was too damging and painful for both of us.


  3. This is the first chance I’ve had to read this since returning from vacation. You may not feel that your light still shines but it does 🙂

    I can’t even begin to imagine what your entire family is going through. However, I have to think that your being so open and honest about everything helps other parents going through the same, or similar, situations even if it’s just to let them know they are not alone and there are others who understand.

    You, Ben, and your family are an inspiration to me as well as many others. Hang in there. My prayers will continue to be with you all.


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