Skip to main content

thoughts tell a story...


Anna’s: 

Please friends, pray for us these next couple days. We are facing some very hard times right now, and need your prayers. Please pray for strength for us and especially for our unborn baby who needs it the most right now.
The baby has hydrocephalus. We don't know much more then that right now. Tomorrow is a barrage of tests and probably a c-section. Thank you dear friends for your support. We are facing our worst fears the next couple days.
Thank you everyone, it really means a lot to us to read your loving comments. In between tears and fears, we put our trust in God. Whatever happens will happen, and it helps to know that you all stand behind us.  We are back home, and c-section is scheduled for this coming thursday. They want to give our son a little more time to help with lung development etc. What we want is for our Leo not to suffer needlessly. Please pray for us to find the strength to bear the days ahead, and if necessary to find the ability and trust in God to do what is right.  Is trying to make every day this week a gift to our son. A gift of glimpses of the best things in life. A summer's day, a poem, a tasty meal, the sound of his family's laughter and the knowledge that we love him forever, no matter what happens.  Water broke, at the hospital now. Please pray for us.  Leo born this morning around 1:00. Our little angel baby breathed on his own, and instills everyone around him with love and peace. Our hearts are calm and our wishes are respected. We are grateful for being given the chance to witness him to Christ. Thank you everyone so much, and we will let you know as things progress.  Leo is hanging on and turning the doctor's many "can't"s into "cans." He proved them that he can breathe, stay oxygenated, and drink. Today there was talk of doing shunts. Not that they will cure him, but will drastically reduce the pressure on his head, and perhaps bring it down in size. We are calling him Leo the lion…


Justin’s:

I feel it coming back again like a rolling thunder chasing the wind forces pulling from the center of the earth again I can feel it. Please pray for us. Life is precious.  Message to Fathers: Love your sons. Don't hold back. Tell them about the world. Tell them about God. Tell them you love them. Do what you can. I am telling myself I will do the same no matter what happens next week and my wife is credited with inspiring me in all my being to love my Son this way. She is my heart.  Many of you don't know all the details, but since I have some time and some peace and calm, this is the latest. My son was born into the world on Monday morning, early. His name is Leo. My wife and I liked that name because of my favorite soccer player, Tolstoy, and St. Leo of Catania (whom I had to write a paper about recently :).  He developed in the womb what they call massive hydrocephalus which has compromised his brain development and continues to do the same after birth. He is not expected to live long.  Nevertheless, he is conscience (we don't know to what degree) and behaving like a normal infant. I am grateful I got a chance to know him and love him. Nothing more desired at this point and no promises just him and his beautiful life. I am at peace. Thank God. Love to all.

Comments

  1. Thank you, Justin. More and more love for all.

    ReplyDelete
  2. Thanks for this, all. We love you and continue to lift you up in prayer.

    ~Nicki and Dusty

    ReplyDelete
  3. What a beautiful, precious baby boy. He is truly blessed to have been born to such parents. We love you all very much!

    ReplyDelete
  4. More love from Lee and Bo. We are with you every day with our prayers.

    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…