I woke up this morning at 6:30am as I always do. Actually let me re-phrase that. I didn't wake up, but I was woken up. Brought to consciousness as it were by the sound of Kristin down the hall and up with Jesse. Kristin was getting the room ready for his morning session of NDT (Neuro-Developmental Therapy). Her sliding rocker is being pushed back into the corner, drapes are swinging open to let the new morning light in and foam mats are going down all over to cover the hardwood floor. I hear her quietly singing to him and asking him all the funny little questions that are continually on her lips to keep him thinking, responding and using all his senses. "Hey, what are doing with those stinky little feet of yours? Are you waving at me? Do you like that song? Wanna sing it again? and on and on it goes. Jesse is doing what he always does when he wakes up. He is playing with his voice. Happily going up and down the scales and experimenting with all kinds of sounds. From my goose down cocoon I can hear him laughing. Just a happy little kid loving spending time with his mom and anticipating the coming day's activities. Jesse's laughing and Kristin's kissing him, endlessly I might add, always kissing him.
What a love affair!
The next hour passes with Bonnie and I trying to salvage some extra dream time but without much success as we can't ignore the sound of Kristin's commanding voice..."SQUARE...BANANA...ELEPHANT!" which tells us that she now has Jesse in a foam chair called a
Floor Sitter that supports him perfectly as she goes through some 12" x 12" flash cards with big bold black on white images on them. As Jesse focuses on each one of them she brightly calls out their names. This exercise is strengthening Jesse's vision. Since his accident occasionally one of his eyes has a tendency to drift in a little. With the ten times a day we run the flash cards with him the damaged nerves in his eye are gradually strengthening. As the early morning hours pass we hear Kristin going down the stairs to make herself a cup of her morning hazelnut coffee, then back up again for more talking, singing and ...oh yes, kissing! Can't forget the kissing.
Leo Buscaglia said, "What love we've given, we'll have forever. What love we fail to give, will be lost for all eternity." He also said, "Love is life. And if you miss love, you miss life." Such simple truths, ones I'm sure that we would be well advised to adopt as our own ideals and put into practice in our daily lives. I do think that the old adage "love conquers all" is for the most part true, however I'm not sure that it's a solo act. Love may be like the head of an arrow that is being supported and driven ahead by faith and strong motivation, and commitment, and passion, and planning and hard work. It's all of these working together, led by love that conquers all. Albert Einstein said that "genius is ten percent inspiration and ninety percent perspiration". That has a similar ring to it doesn't it?
Out of bed now, I'm up and dressed and I take the short walk down the hall to Jesse's room. He's usually lying down by now and taking a bit of a break. I lean over him and give him my usual great big, "Hiyaa!" Jesse immediately smiles his little coy smile. "Hiyaa!", I say once again. Jesse starts getting animated his arms moving up and down and I hear his little laugh starting up. He's knows I am expecting a response from him and he's anticipating it. One more time I repeat in a big and excited voice, "Hiyaaaaa!" That's when I hear it, "Huyuuuu!" Jesse gives me his version of a good morning hello and continues trying to get his laugh out. So much work his little brain has to go through to recognize the need to speak and to send the signals through damaged pathways to finally reach his vocal chords. The important thing though, is that when I say Hi he knows that it is his cue to try to communicate, and that he does. I know we will all go through this 'Hiyaa routine' with him several times today to keep solidifying in his mind the need to communicate, to put into his mind the desire to interact with those he loves, and encourage in him the motivation, commitment and passion to drive him forward, all led by HIS love for us. You know what? I'm thinking Leo Buscaglia was right, "Love is life. And if you miss love, you miss life.", and I can promise you this, Jesse is missing neither.
Earlier this week as I went about my daily commitments I noticed a small child maybe about 3 years old walking with his mom and wearing a little pair of glasses. I thought nothing of it other than how cute he is. It's then that I noticed something about myself, just how much I have personally changed since Jesse accident. There was a time when I would have seen that child with the little glasses and thought, "Aawww, that poor little guy has to wear glasses. He must have trouble with his eyes". But now the only thoughts that occurred to me were, "look how beautiful he is. Look at that little person just walking around with his mom. Look at his hands reaching out and what a beautiful little voice he has." Over this past year we have met so many parents with a child who has suffered a brain injury that it almost seems to us like the well child is in the minority. We look at them in partial amazement at how capable they are, how easily and naturally they can do things. The problem in the brain injured child is that the brain injury acts as a barrier to the reception of incoming sensory stimulation that they receive through the visual, auditory and tactile pathways, just as their injury may also act as a barrier to their outgoing motor responses. Even the smallest of expression can be a major hurdle to a brain injured child.
Though our family can't be sure, we are anticipating three to five years of intensive therapies with Jesse to build his brain back and the billions of neuro connections that are needed for a normal and productive life. This is such an adventure for Kristin as it is for our whole family, but especially for Jesse.
It's now 10am and I hear the familiar sounds of Kristin packing Jesse up and preparing him to leave for other therapies across town. It will be 3:00 when they return home. One of our wonderful and irreplaceable nurses will arrive at the same time to take over Jesse's care and get back to his Neuro-Developmental Therapy as well as his audio and visual stimulation exercises while Kristin retires to her room for a much needed break. By 6:00 Jesse will have his bath and some cuddle time and be off to sleep by seven. We know he won't wake up until six or six thirty tomorrow morning. Such a blessing that he sleeps so well at night, but all for good reason. Our little man will have worked hard today as he does everyday. He will have laughed through the little games we play with him and he will have cried through his frustration or discomfort in therapy. But that's all we know, all we can see is on the outside of him.
We will wonder today as we always do, what is really going on in Jesse's brain? What thoughts is he thinking? Is he thinking about his goals? His desire to talk to us in words like we use, and to stand up and walk as he had just learned to do prior to his accident. What about his desire to reach out and take our hand or launch his own kissing and hugging attack on his mom as passionate two year olds often do when their little hearts can't contain the love they feel.
I will pray for you tonight Jesse. My prayers will unite with the prayers of so many others who care about you. So know this Jesse, we know you are working. We see that you never give up. Your efforts are not without purpose and we are standing with you. When you feel discouraged and wonder about your future, and on what you can depend, you can depend on this. You will not be found wanting of love, nor will you be denied the joy that your life holds.
The forecast for tomorrow?...The sun will shine brightly, and opportunity is rising on the horizon.