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Plastered....with love!

I apologize for the lapse in blog posting, and thank you for being so patient. We are so thrilled that you are all still keeping up with our Leo-man, and even though things are at a relatively steady place right now, we survive day by day with your prayers. Thank you, thank you, thank you!

Some updates on the medical side: Leo has had several appointments ranging from an EEG to Well-child checkup, to neurologist, to orthotics etc... Leo has also rekindled some debate with one of his neuros about his diagnosis. What a surprise! Who would have thought? (Insert mild sarcasm) Apparently he is thriving and hitting milestones which is a far cry from the grim and terminal prognosis with which we left the hospital half a year ago. Vegetable he ain't. Amazing, mysterious, and healthy are the adjectives that should be applied. Our guy has everybody baffled, and since no-one likes the suspense, he is getting a full in-depth MRI in the beginning of April. I'm sure folks will be lining up to the see his report! Justin and I are trying to keep our cool in this respect, since our attitude towards our little guy will always be the same. However, I won't lie when I say that if there is anyway to get rid of that terminal label we will be ecstatic. In regards to his head shape/size the game plan is to get him into a cranial shaping helmet for six months, after which we will talk again about the reconstruction surgery. Wouldn't it be amazing if they could fix his head so that he will look completely normal? Of course there would be other physical benefits too, not just for aesthetics. His head would be drastically lighter which would give him a much better shot at greater head control and development. Anyway, so today after weeks of getting all the paper work squared up, Leo got a plaster cast made of his noggin at the orthotics office. I felt like I was back at Art School, messing around with plaster sculptures! Except instead of making abstract art I was helping to make a plaster mold of my son's head. It was pretty fun actually, though Leo wasn't so sure. In a couple weeks we should get his helmet and the really fun part will start. He gets to wear it 23 hrs a day. Every day. I am sure it will get old real fast, but all the doctors seem convinced that it will make difference. In his case, any little bit helps.

These days, it's not so scary to think about the future anymore. Perhaps we are even getting used to the "new norm" that is our life. I don't think we will ever stop grieving for what might have been, but that pain is becoming duller and more manageable. It's easier to think about acceptance, and thankfulness. I remember just a couple months ago for Thanksgiving how empty the holiday seemed for me. How I felt cheated and hurt by fate. I told myself that I had nothing at all to be thankful for. Now as the winter slowly starts thinking about spring (slowly being the key word) I find myself rethinking my earlier convictions. For us Orthodox Christians, Great Lent is starting on Sunday, and the coming week is usually a time when we try to clean ourselves of bad thoughts and feelings, of guilt and grudges, of anger and hurt along with asking forgiveness from our friends and family. As I think about thankfulness and forgiveness, I realize that both of these are not so different. Perhaps my feeling hurt and sad instead of thankful is akin to not understanding forgiveness. For me to be truly thankful I need to forgive. To truly forgive, I need to understand true thankfulness. I need to forgive all the pain that has turned me bitter, all the crazy intensity of my emotions and thoughts over Leo's birth and condition. It is even harder to forgive when there is no clear figure to blame. On Thanksgiving I blamed myself, God, the world, everything. Now I realize that I can't sustain that position without endangering everything that makes me a human being. So this Lent, I am not only asking for your forgiveness, I am asking forgiveness of myself and of our situation. When my little guy looks up at me, and I see his whole heart and soul in his eyes, I can not believe how blessed I am. I am so thankful for him. Dear friends and family, please forgive me! And only through love and faith in Christ are we all forgiven.




Comments

  1. Anna and Justin,
    Thank you for sharing your story with the world! Leo is truly a blessing not only to you, but to everyone else as well. Thank you again for making me realize that the simple things in life are the ones that are most important!
    I hope you have a blessed Lent and Pascha!
    ~Elizabeth Ketz

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  2. This post really made me smile. Thanks for the reminder about the importance of Lent and forgiveness.
    Lots of things to be anticipating this Spring :)
    Bug

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  3. Thank you for this post, Anna. Your frankness and openness are so inspiring and cut me to the core. God forgives. Please forgive us! A blessed Lent to you and your family. With love from all of us here.

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  4. As usual I am awed by the beauty of your words and Leo's smiles.
    Thanks for the words of wisdom and joyous pictures of you all.
    Thankfulness in all things is an act of faith that I am just beginning to understand in my 60th year :-}
    You have a head start on me!

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  5. Leo's smiles are contagious! I just love the photo in your header. And I am so glad to hear that Leo is doing well and keeping those doctors on their toes as usual. I hope that this Lent will be a blessed one for you all!

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  6. Nice one anna, way to show us how to keep love on top, the kind that fought to get there. fc

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