Today our son has been gone from this life for 3 years. If he were still alive, he would be almost 4.5 years old.
In honor of this anniversary, I wanted to re-post the letter that we sent out to friends when Timmy got his diagnosis. I think that it is just as true today as it was back then. This letter was first sent out on June 20, 2008. Timmy passed away on January 10, 2009.
Thank you for your prayers for our son. Timmy has been diagnosed with a genetic condition called Leigh's Disease or Leigh's Syndrome. In the short term Timmy is a healthy, growing boy. However, if the doctors are correct in their diagnosis, the long-term outlook is pretty bad. It's a progressive disorder, and while there are rare cases of kids living to be teenagers, most do not live longer than a few years.
We have been hesitating to talk about the diagnosis very much because as we move forward, it will be very important for Timmy's sake that we all focus on loving him and showing him Jesus' love and helping him to be healthy, rather than focusing on the stress and the difficulty and the potential that he might not make it. Those little ears are listening and the little eyes are observing all that is going on around him. He may be delayed, but he is not dumb. He knows that there is something going on, and we need to do our best to encourage faith, hope, and love rather than fear, uncertainty and doubt. Otherwise, his eating and his sleeping just really decline and that makes Mama stressed, which makes the eating and the sleeping even worse! And if he's not eating and sleeping well, that puts his health in more danger. I acknowledge that this is a horrible, awful thing to go through and our hearts are broken, but he's still our Timmy and for right now, he's still very healthy.
Also, please keep in mind that this disease is unpredictable and our God is All Powerful. As I spoke with some of the nurses about my grief, a couple of them shared some very poignant stories with me.
The nurse who was with Timmy throughout the second MRI test shared with me about a patient he had been caring for who had a very bad lung condition. It got to the end and the family decided on a date to pull the plug. When that day came, they did a lung scan and found that his lungs were completely clean. They thought that there must have been a mistake and that the charts had somehow been switched. But when they re-tested him, it was really true that his lungs were clean! So this nurse encouraged me that sometimes Jesus does miracles.
Another nurse friend of mine shared that sometimes as she has been with her patients when they died, she believes that Jesus personally came to escort them to the Father. She said that one of her patients screamed the way that she did when she saw an unknown person in the room, even though no one was physically there. And with other patients, my nurse friend noticed a real sense of peace in the room.
So for my Timmy I think that Jesus is either going to heal his little body either directly or by helping scientists find a cure for this awful disease, or else He will come to escort my little boy into the presence of the Father. And either way, there is hope.
Lately there is a song that keeps going through my head, so I finally looked up the lyrics. The chorus goes like this:One day at a time sweet Jesus
That's all I'm asking from you
Just give me the strength
To do everyday what I have to do
Yesterday's gone sweet Jesus
And tomorrow may never be mine
Lord help me today, show me the way
One day at a time
Lara for the Elfstrands