Gratitude (Feb. 10)
After clicking “publish” the other day on what was one of the more difficult posts we’ve written since starting Lucas’s blog, we thought about the 
gradual stream of people who would receive the news about Lucas’s disease. We imagined some people crying, some staring at the screen in disbelief, others feeling a strange sort of relief about our discovery, others immediately googling “myotubular myopathy” and wanting to find out every piece of information they could about the disease that Lucas most likely has. We didn’t imagine people feeling despair or pity; rather, we imagined a giant groundswell of love directed towards Lucas and us. This is what has come through in your messages and for that we are grateful.
Lucas is still in the hospital since he hasn’t stabilized 100% and because the second all-out blizzard in the last week is blowing through DC as we write this. We still can’t wait to get him home, and we are certainly getting sick of some of the routine around the hospital, but we also can’t help but be a bit calmed by the reality of riding out the storm with lots qualified people on hand. Lucas has had some ups and downs since we last wrote but right now he’s happily snoozing in mommy’s arms having recently finished a session of playing with his new friend Jonnie the Moose (she’s actually a helium balloon). He cringed when he heard that they were going to take more blood for another lab, but we assured him that the DNA test for Myotubular Myopathy was much preferable to undergoing a muscle biopsy.
As for his parents, we’ve had some tough moments over the last few days but some good ones as well: sitting up late into the night talking about children with special needs with a wonderful nurse who’s son grew up deaf; giving Lucas a warm sponge bath as he repeatedly squinted up at us with his new “badger face” (a result, perhaps, of some p
uffiness in his arms, legs and face); and eating a home cooked meal with our friends Max, Jess and Sha who trudged over to Children’s as the snow began to fall last night. We’ve cried some, mostly those good tears that come from love, grief, and the reassurance that you’re damn lucky to feel that love in the first place. Those tears will keep coming, as will laughter and humor. In fact, we’ve cracked ourselves up more than you probably would have imagined the last few days, silly jokes that emerge after spending way too much time in the hospital (see the picture of Lucas in the ER). And we continue to feel gratitude for the extraordinary family and friends that make up Lucas’s loving community.
Comments (11)
Margo
February 11th, 2010 at 5:07 pm
Just catching up on the news and wanting to give you guys a huge hug from out here in Seattle.
cathy m
February 11th, 2010 at 4:54 pm
burke, krista, & lucas — i’ve been reading the blog since the start, and just wanted to say that i am sending all the warm thoughts i can muster over your way!
Claudia Rodriguez
February 11th, 2010 at 3:59 pm
Hola amigos,
No he parado de pensar en ustedes desde que leí el ultimo posting. También segui leyendo sobre el “myotubular myophaty” y me topé con un website que de seguro ustedes ya conocen: The Joshua Frase Foundation. Allí lei un artículo muy esperanzador sobre el research que se está haciendo para encontrarle una cura a esta enfermedad. Abajo copio el link:
http://www.joshuafrase.org/info/nibs.php
Los tenemos muy presentes en nuestros pensamientos.
Con cariño,
Claudia
Evan and Aaron
February 11th, 2010 at 2:13 pm
Rather than waiting any longer for exactly the right words to come to us, for now we just want you to know we’re thinking of you all the time and sending you our love. The three of you make our hearts smile.
Jennifer Sagum
February 11th, 2010 at 11:36 am
Burke, Krista & Lucas,
I think about the 3 of you daily and am inspired by your love, honesty, humor and hope.
Thank you for sharing your story – Lucas is a little fighter (a super cute fighter) and while I know the road ahead is uncertain and won’t be easy, I appreciate your willingness to share the journey. You’re an amazing family and I will continue to send lots of positive thoughts your way.
Love, jen
trin yarborough
February 11th, 2010 at 10:21 am
Sending love to Lucas and to both of you. Lucas seems to be very special and brave, and he is very lucky to have you as his parents Love, Trin
Paola and Simon
February 11th, 2010 at 10:06 am
Crying, some staring at the screen in disbelief — that was us. Feeling a strange sort of relief about our discovery — also us. Immediately googling “myotubular myopathy” — we practically bookmarked it by now. Despair — I won’t deny it. But mostly, like you say: a giant groundswell of love directed towards Lucas and you. Pensando en vosotros. Cuidate.
Jocelyn
February 11th, 2010 at 10:01 am
As I continue to process the news, I find myself contemplating how Lucas’ special needs, while heartwrenching, also make him one of those extraordinary people who leave a powerful and positive mark on every life that he touches. Just think about how profoundly he has already changed those of us who have had the privilege of knowing and loving him (albeit virtually) in the first five months of his life. We have been deeply inspired by his strength, by his determination to move and look and play and love despite the frustratingly low response of his muscles, and by the power of unconditional love that exists between the three of you. It reminds all of us to appreciate the many gifts we’ve been given in this life, and inspires us to stop our whining and use our tremendous privilege to fight harder and better and longer for the wellbeing of others. If Lucas can be such a fighter despite the obstacles he faces, then what is stopping the rest of us? In a world where people come in and out of our lives quickly and perfunctorily, easily dealt with and forgotten, Lucas will always be that one person that people will remember, learn from, and grow because of. I know the little guy has a lot of tough struggles ahead, but I also know that he will continue to fight through them all, and for that I will always remain grateful to him–for being such a beacon of light and inspiration and power in this sometimes dreary world in which we live. Thank you, beautiful little one.
Erin Fulham
February 11th, 2010 at 8:20 am
Holding you all in the light. I am glad to hear Lucas is feeling better. As always I love your pictures. He is one long little boy. Hugs to all. Erin
Allison
February 11th, 2010 at 12:42 am
I actually had all of the reactions you describe: staring at the screen open-mouthed in disbelief, crying, a strange sort of relief (to have something to google & get a picture of what the future might hold), followed by googling myotubular myopathy.
You all are truly amazing and strong. What a beautiful family.
Sending you much, much love.
Claudia Rodriguez
February 11th, 2010 at 12:39 am
Hola amigos,
A mi también me ha sido dificil leer sobre la posible enfermedad que tiene Lucas. Debo de confesar que mi primer impulso fue googling “myotubular myopathy.” No puedo imaginar lo dificil que ha sido para ustedes. Lucas es extremedamente bendecido por contar con padres como ustedes, tan amorosos, tan fuertes y tan llenos de esperanza. Y como ustedes bien lo dicen, Lucas les ha dado ese privilegio de experimentar tanto amor que no les cabe en el pecho!
Gracias por compartir su vida con nosotros, es un honor para todos los que seguimos el blog. Nosotros en particular hemos y estamos aprendiendo mucho de ustedes.
Un gran abrazo y muchos besos para Lucas. Espero que siga mejorando y que pronto esté en casita con ustedes.
Con cariño,
Claudia, Geoffrey y Marcela
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