Skip to main content

Change Our Sadness

So due to popular demand, I finally beat my iMovie program into submission and was able to put together Leo's annual movie.. Hope you like it! And don't be afraid to leave a comment, even if you are new to us and our journey. Sometimes I panic that our words get lost in the mumble and jumble of the www, though the hit counter on the blog here proves otherwise! (I still can't believe we are way over 100,000!)
In some way, this movie is a tribute to all of Leo's faithful readers and followers who come back time and again to check up on him and also especially to those who have prayed for him, and make room for our little lion in their hearts. You have our eternal gratitude and awe!





Whenever I pull up the photos from two years ago now, when our little man's story started, I always find myself wincing and flinching, and in some way, feeling the pain that we felt way back then.  I always have take a couple deep breaths, maybe say a prayer or two, before I can really view them comfortably. However at the same time, I also remember feeling happy when I took the pictures. Even though we thought Leo was going to die, even though we were in emotional no mans land, every time I captured his look, his expression, his "aliveness" I was happy, if just for a second or two. So it always takes me a moment to stop feeling sorry for my past self, and to let the happiness seep in. Even on hospice, even in the midst of suffering, there is joy to be found and peace to be had. I say this, because my thoughts and prayers today have been with a family who I don't even know, but heard about through a friend. They are going through something very similar with their several week old baby girl who is not expected to live. I'm praying for their courage and for peace, and also for a bit of the eternal joy that can be found in sadness for them. We all know miracles can and do happen, but as weird as it sounds, there is also the miracle of peaceful and bearable grief. Because every moment eventually passes, and every season eventually changes, as do the sharper feelings get stripped and blurred away, until, hopefully, it is easier to remember the smiles and the peaceful moments, instead of the hard and bitter ones.
This is what I tried to highlight, at least in some small way, in this little movie that is just in time for Leo's second birthday this coming Thursday.

Comments

  1. love this movie; may God bless and protect!!

    ReplyDelete
  2. I love this as I love the little Lion and all of you. It made me cry in both sadness as I thought of all you've been through, and joy as I think of all that Leo has acomplished and the joy that he brings the world. He is an inspirational gift from God and will hold a piece of my heart forever. Thank you for so unselfishly sharing him with us. Love, hugs and prayers.

    ReplyDelete
  3. I check this blog regularly. I absolutely LOVE seeing the progress!! I wonder if the baby girl you mention is the one I cared for because if it is, I gave them your blogsite!! Perhaps you will connect. When I first met Leo, I knew there was more to him than was being said. I feel the same about the baby girl!!!
    Sterling

    ReplyDelete
  4. What a wonderful job sharing God's miracle with us. Leo is a inspiration to all of us-a light of strength.
    Happy Birthday, Leo

    ReplyDelete
  5. Beautiful video. Many, many more blessed years, Leo.

    ReplyDelete
  6. Happy Birthday, Leo! May God grant many years to you and your family!
    Dear Anna, I've been reading and watching this wonderful story of your family you are sharing with us and feeling very grateful to you for your courage. What a wonderful Leo, little lion, you have.
    with love and prayers
    Inna

    ReplyDelete
  7. Thank you so much for sharing him with us. It's unbelievable how much that boy has been through, and that he keeps on going with that SMILE! Special boy indeed. Happy Happy birthday to him. Fabulous video. :)
    Tina

    ReplyDelete
  8. Hi Leo
    Hi My Name is Jenna
    You are a brave courageous fighter, and an inspiration.
    I was born with a rare life threatening disease, 14 other medical conditions, and developmental delays.
    Tis a lesson you should heed,
    Try, try again;
    If at first you don't succeed,
    Try, try again;
    Then your courage should appear,
    For, if you will persevere,
    You will conquer, never fear;
    Try, try again
    who invented fire? some bright spark
    http://www.miraclechamp.webs.com

    ReplyDelete
  9. Mr. Leo, You make us smile through the tears!!!!! Thank you for warming our hearts and through your LIFE reasuring us that God is always near. With Much love The Smalleys Keep sharing! We love watching Leo grow even if it is (most of the time) from afar!!!!

    ReplyDelete
  10. If it were my call, I'd present Oscars to Leo for Best Actor and Oscars to his family as Best Supporting Actors. The miracle continues......!

    ReplyDelete
  11. Hey there. That movie is really something special. What a gift you have.

    ReplyDelete
  12. Hello! And, happy, happy birthday to Leo! I followed your posts regularly for at least Leo's first 6 months and then just lost touch, but I've subscribed via email now, thanks to Gwen's FB share :) Though we didn't know each other well, your presence on campus was grace in my life. Thank you for all the many ways you have always let God's grace show through your lives! My family is seeing a great deal of sadness and illness right now, and Leo's story reminds me that our God is God of Life. Thanks for sharing the videos and keeping the blog. What a gift. Thank you.

    ReplyDelete

Post a Comment

Popular posts from this blog

Pharmaceutical Fallout

I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure.  To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino. I'll tell you why: So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands. Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse. It's true, one does not mess about with allergic reactions. He was seen by his neuro within the hour, and after some bullying and grilling from yours truly, the action plan was det…

Not Your Average Special

Leo. This kid. Honestly? Life with the lion can be quantified in two parts: into a simple 60/40 equation. The 40 being the happy normal parent feelings, and the 60 being sheer exhaustion, confusion, worry, and what-the-hell-is-it-now feelings.  All normal right? Just another day in parent land. Wrong. I have always been an advocate for down-playing the special neediness of special needs. Yeah, yeah we all think we are special in our own unique hardships, get over it. We all have crap in our lives to deal with. But I might be starting to change my outlook.  Just a bit. Case in point: Leo and consequently me and everyone else who lives with him, have now been dealing with daily seizures for well over a year. Ok it doesn't sound that bad, when you string the words together and type it out into a sentence; there are way more scary sentences out there like "your child has a terminal brain defect" sentence etc etc. That sounds way more scary than daily seizures. This I know f…

The Rhythm of Life

When I think of the word rhythm, what comes foremost to my mind is a picture of my grandpa's metronome. My grandpa, when he lived in Russia, was a fairly well known voice professor who dedicated his whole life to the perfection and instruction of the human voice. As long as the human in question was applying said voice to opera and only opera, that is. Opera, in my grandpa's mind, was the only music worth bothering with. All other music he condescendingly referred to as "the bebop" with a lot of Russian eye rolling and sighing. He taught me about rhythm by sticking his old wooden metronome on the edge of his piano, and commanded me to never take my eyes off it during the whole voice lesson. Since it was conveniently eye level to my ten year old self it was pretty easy to get completely mesmerized watching the little weighted metal stick swish side to side, side to side, side to side.  I'm thinking now, almost twenty years later, that it may have been part of gra…