Monday, March 14, 2011

Max pays his respects

The weekend was filled with people coming to our house to pay their respects. Friends and family trickled in and out, and it was comforting to have them around.

Sabrina knew people were visiting because Zadie had died, and kept asking her questions about death ("Is Zadie still dead today?"). Max didn't get what was going on. His thoughts this weekend centered around one thing: the kiddie trailer that attaches to Dave's bike. We'd taken it out to see how it survived the winter in the damp garage, and Max only wanted to be driven around in it. Luckily, there were extra chauffeurs on hand. We tucked Max in with a Snuggie and Dave, my brother-in-law, and my sister-in-law took turns carting him around. Max would have spent the night in that trailer if we let him (although, hmmm, it might cure his co-sleeping habit).

Today, as Max whizzed around the neighborhood yet again, I was a little preoccupied with the fact that he didn't understand something had happened to Zadie. Is that weird? Grief does strange things to you. I wanted to honor my father this weekend by all of us remembering and commemorating him.

But that comprehension is not where Max is right now. There I was, once again imposing my hopes for Max's abilities onto his reality.

I had a sit-down with my heart. I said, in no uncertain terms, that Max honored my father by being his usual cheerful self and by lifting the spirits of everyone around him. That was his tribute.

I hope my father, wherever he is, knows that.



  1. Ellen, I am so sorry for your loss. Please know that I am thinking of you.

  2. I am sure he dose! Your father sounds like he was a fantastic man, and like he set out to help and understand Max right from the beginning, and it sounds like he did. We all play our roles in life and it sounds to me like Max filled his perfectly, he is bringing joy in the face of misfortune/grief. Love that Max.

    I am sorry for your loss.

  3. Ellen, I am sorry to hear of the loss of your father. My thoughts and prayers go out to you and your whole family.

  4. You, wise woman, came to the correct conclusion.

    Hope you're doing OK.

  5. Just today, I have been thinking, "how do I reconcile 'wanting more for my child' with my acceptance for her (and complete love for) just who she is?" I WANT things to be easier for her. But you are right -I cannot impose my desires onto her reality. Wise woman indeed.

    Thinking of you and your family right now!

  6. I don't think it's weird at all! My children's Great Grandmother passed away very suddenly in December. My daughter (6 years old, PDD-NOS/Chromosome abnormality) does not understand. She will see a picture of her around the house, and ask if we can go see her. They were very, very close. Sometimes I try to distract her (doesn't take much!) but sometimes I tell her the truth, that she can't see Grandmother anymore because she went to heaven. Every time she cries and becomes very upset and it breaks my heart. I think you're right, Max WAS honoring your father, and I believe your Dad knows it. I'm not sure honestly where I stand with all things religious, but I do believe that once a person passes away, that where ever they go, they are whole and healed. That being, I'm sure your Dad got great pleasure in seeing Max having a great time and probably even got a laugh out of Max suckering everyone into being his taxi driver. :) Hang in there Ellen. My thoughts and prayers are still with you and your family.

  7. There I was, once again imposing my hopes for Max's abilities onto his reality.

    Therein lies, at least to me, the single greatest Truth about why I think we, as parents, feel the greatest amount of pain/sadness/grief/guilt/frustration/whatever when it comes to the lives of our disabled children.


    Ours. On theirs.

    I don't know how many times, and it is COUNTLESS, that Jennifer (that be Mrs. Blogzilly) turns to me and says 'But at least Bennett seems happy.' whenever I express a frustration over something we did not achieve with him.

    It's MY perception of it that sees it as failure, not Bennett, he's having a blast. He doesn't read his IEP, his FATHER and MOTHER read it. He's playing and smiling in the corner.

    It's important, just as you point out, that even in the darkest times, like mourning, to remember that. Our perceptions have to remain separate from how we...what's the best word here...'assess' our child's actions as we need to remind ourselves that his/her perceptions will always be different than our own.

    Max will always just BE Max. Bennett will always just BE Bennett. And you're right...that's OK. That's how it should be.

    Hope you're doing well.

  8. Great realization... you are absolutely right.

  9. Your father understands perfectly.

  10. I agree - I think your father does understand and loves you so much for being such a great mom.

  11. Ellen, I too am so sorry for your loss.

  12. I am so sorry to hear about your loss! I know that it is hard when you don't see the emotion you expect from your child, but be glad that is was happiness and not vice versa. You have been blessed with Max's joy and the family that surrounds you. You are in my prayers. Hugs to you and your family!

  13. Ellen, I am so sorry to hear of your dad's passing. No matter how much you expect those things, it is still shocking and devastating. The marijuana hat is the only memory I have of him, but it is a pleasant one. He must have been a pretty special guy to produce a daughter of your caliber! I pray you and your family continue to heal in your own special ways. ((HUGS))

  14. Dear Ellen,

    Our deepest condolences to you and your family on the passing of your father.

    I know how it feels when a "Zadie" leaves us...

    I have observed Leo to sing, seemingly to himself, upon the passing of a loved one. While my Heart broke due to this horridly sad part of Life, I was able to feel my son sang in communication with the smile of the beloved, which I could not see, through my tears.

    You are in my Heart and mind, and you will continue to be. I am always here for you; *we* are- although we have not personally *met,* I feel we know each other.

    HeartVibes we send to you and your family. CherylFaith, Robin (husband) & Leo

  15. @dderbydave: Thanks...appreciate it, though it was just an echo of what Ellen started.

  16. I bet your dad can see right into the heart of Max! And knows EXACTLY how Max feels about him.

    When my Dad died, I found my kids reacted in ways I didn't expect. They didn't talk about it nearly as much as I expected (and I'm talking about my typical kids -- Ben came to the funeral home with me and was very distressed to see Grandpa in a casket).

    The lack of discussion and keeping his memory alive by the other kids made me feel hurt and puzzled. But I later came to the conclusion that death is just really hard for kids -- even those who are preteens and teens.

  17. I am so very sorry for your loss. However I am sure that Max brought a smile to many sad people, and your dad would not want Max to be sitting around being a mopeypants.

  18. i am sure not only your father knows but he is thrilled at max's way of showing his rspects. grief does do odd things so dont 'shouldn't' yourself at all. i send big hugs and whatever you feel you feel and thats just fine. hugs again xxxxxxxxxxxxxx

  19. Words fail me here, so I am sending hugs.

  20. Ellen, you and I don't know each other but reading about your dad here has given me strength. My mom is in the hospital. She is 77 and has Parkinsons. She had acute renal failure and I do not know what will happen to her. I understand your dad was 86. I cannot express words that will explain how sorry I am for your loss. I am in your shoes. I know the pain.

    We travel different roads in life but I do know how much the love of our children means at the moments of sadness. Max is giving you a gift by being Max. I agree. Hugs to you.

  21. Ellen, I am so sorry about your father.

  22. I am sure your father would appreciate Max's fun and spirit. It's awfully difficult when you lose someone so close and have a child who doesn't understand but Max's loving joyfulness is its own tribute to your father.

    My love and condolences to you all.


Thanks for sharing!

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