The art of loving Lucas (Sept. 9)
We spent months preparing for Lucas’s birth. We learned about the history of obstetrics and midwifery in the U.S., about which herbs and foods are good during pregnancy, about the stages of labor, and even practiced a couple of relaxation techniques (although we were still 11 classes short away from graduating when Lucas arrived!) None of that, though, prepared us for how it would feel to have a baby.
It is hard to put into words the overwhelming love and awe we feel for Lucas, an experience probably all parents can relate to. To stare at four and a half pounds of life that we helped create is amazing, even as he struggles to survive right now, with a whole unknown, unmapped life ahead of him. It’s such a wonderful feeling to be able to spend whole days just sitting and loving Lucas: watching him sleep, holding him for an hour, feeling his fingers wrap around one of ours, and then watching him sleep some more. We know that love plays some role in the healing process, and we imagine that Lucas is feeling this too.
Today we got to give Lucas extra loving, holding him for over two hours and grasping his little hands through much of the day. He also got lots of attention from doctors, with visits from the neurologists, geneticists, neonatologist, and an opthamologist. The reports are still generally good, but without a diagnosis. The opthamologist said his eyes look fine, with a slight chance of damage to the nerves in his eyes because of bleeding in the brain, though nothing major. In the end she saw no clues in his retinae, such as signs of an infection, that would help lead to an overall diagnosis.
The neurologists were happy to report that the fluid in his ventricles remains steady and that they won’t drain more fluid again unless it increases. And the genetics team came by because nobody else has a diagnosis, so they were called in to see if they missed anything the first time. But Lucas still looks good to them with nothing obvious they can see that would point to a genetic disorder, and they’ve already screened for most of them anyway. We told them to look for some condition which includes symptoms of “getting cuter every day”… then they might find a match.
Comments (12)
Hally
September 11th, 2009 at 3:01 pm
As Mommy Krista’s soulful path buddies meet for dinner tonight, I know we will think of Camilito (I love this since I have my own Azellita) and Krista and Burke. I’m so happy to have the blog so I can follow the progress of this little guy. He belongs to all of us now. We will miss you tonight, Krista, but see you soon in church, and we’ll all celebrate on the day you bring Lucas with you. Love from all of us.
soyun
September 11th, 2009 at 2:55 pm
girl! you are a soldier. i agree with one of your other friends. so glad that you and burke are camilito’s parents. andy agreed that we should bring you korean noodles. but he wants that to happen on a day when he’s in town so i can bring him some too ;] i’m aiming for next wednesday around lunch time. so much love for you and the fam.
Madeline
September 11th, 2009 at 12:16 pm
I strongly agree that Lucas is getting even cuter every day, and he certainly has a lot of friends! I think about you guys every day – I’m so glad Lucasito has you two as his parents. Each day brings the three of you closer to being at home together.
-Mad
Vrinda
September 11th, 2009 at 8:05 am
This is so sweet. I’m glad to hear that things seem to be improving, and thanks for sharing the words about how it feels to be a parent. I hope I’ll get to meet Lucas soon! That is one cute and inspiring baby!
Amalia
September 11th, 2009 at 1:11 am
Sweet Lucas and his parents-
You are all on my mind and in my heart. Thankyou for sharing your story, and for being such incredible models of faith, strength and love. Keep fighting the good fight!
In love and admiration, amalia
nonna stansbury
September 10th, 2009 at 11:47 pm
He is cuter every day and the improvement since we’ve been there seems to be very positive. His color, his movement, opening his eyes, his weight, taking his milk, holding his “Bruno” even tighter— all these things are tiny steps but they are forward steps towards his future. This young man is a survivor. There are more than a few Camilo activists, by the way…..
Hugs and love and XOXONONNA
Sammie and Dan
September 10th, 2009 at 10:44 pm
So jealous that Dan got to meet Lucas and I haven’t yet had the pleasure — but I feel like I’m getting to know him thru your inspirational and moving accounts of his remarkable progress day by day! He’s adorable!
Laura M
September 10th, 2009 at 1:04 pm
Hey y’all-
It is so great to see little Lucas’ continued progress! You continue to amaze me with your patience and grace through such a stressful situation. Lots of love!
laura
Victory
September 10th, 2009 at 12:48 pm
Dear Lucas,
I am a friend of your grandparents out on the west coast. Through them I have gotten to know you and your wonderful mom and dad. You have chosen a good family to come to!
I just wanted to let you know that every day a number of people you don’t know are sending love and prayers for your health and well being. Just know the “prayer warriors” are on your case!
Your quiet courage and determination, and that of your family, inspires us all and we are pulling for you!
Someday when you come to visit Whidbey island I look forward to meeting you, and your folks, in person. What a happy day that will be!
Mary and Rannie
September 10th, 2009 at 2:00 am
Mary and Rannie are sending loads of love to all three of you from here in Culpeper.
Margo
September 9th, 2009 at 11:31 pm
I was noticing that myself! He is getting cuter every day.
kate and tadd
September 9th, 2009 at 11:23 pm
hello burke, krista and cute baby lucas,
saunder just sent me a link to your blog. I’ve spent the afternoon and evening getting caught up on this amazing little boy. Not to mention his amazing parents. The love is everywhere and we all feel it but most importantly like you said Lucas feels it. Tadd and I are on the west coast thinking of you all. we love your rad little family.
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