giving thanks anyways

Well, we learned more about Caleb's situation just before Thanksgiving this year. The doctor called to tell us the results of yet more tests that they did on my son recently. I just expected her to say that they all came back negative again. Only she didn't. They found something. This excited me because I want desperately to be able to explain why my kid is not healthy and has so many delays. However, after the initial excitement of finding out that my son has "shortened telomeres," I soon discovered that that's pretty bad news. I want to say really bad news but I must not forget that God is in control and that this "news" didn't surprise him, so how bad can news really be? I trust Him. So what are shortened telomeres, you ask? Good question! I'm trying to research it but I'm still about as clear as mud on all of it. My Taiwanese friend said it's like the plastic tips at the end of shoelaces, protecting the DNA from breaking down. As we age our telomeres shorten naturally, but you wouldn't expect to see them shortened in a two year old. Medically speaking it means a shortened life expectancy and a high risk for cancers. I say medically speaking because my God is the great physician and nothing that is written on google or in my doctor's handbooks is written in stone for the life of my little boy. I trust Him. Well, now that we know he has shortened telomeres, now what? Now the doctors are seeking approval from insurance to do further genetic testing based on this new information. I hate to even write it but the disorder that would most closely match his symptoms is called Dyskeratosis Congenita. I don't want to go into all the details here but it's a grim prognosis to say the least. Please Lord, no! And yet I know that if that's what it is He will walk with me through it. I trust Him. People say that being thankful is a choice and that choosing gratitude brings Joy. It all sounds cliche until you're dealing with a bunch of bad news the week of Thanksgiving. But it's true. I can choose joy by focusing on what I'm thankful for, and right at the top of my list is: each and every day with my sweet boys. As parents we never know how much time we will have to enjoy our children here on this earth, whether they come with a diagnosis or not. So I choose to cherish each day and I choose to have a grateful heart. After all, I trust Him.

progress

Thank you for your positive feedback on my last post. I just wanted to say that in these past few weeks we've been seeing a lot of progress with Caleb. In every area. He's grown physically, his blood counts are up, and he's making improvements with gross/fine motor and speech. The therapists who did his original evaluation say that he looks like a totally different kid. Not to say that he's entirely healed or caught up to other kids his age, but when he is making progress it is much more encouraging to this mama's heart. Usually as parents we get the gift of seeing our kids grow and change right before our eyes, but for a while Caleb had been stunted. He didn't grow. He didn't develop. He didn't learn any new tricks. That was hard to watch. However, it is equally wonderful to see him progress. In the past month he has grown a little taller, learned to walk much better, actually cleared the ground on his jumping attempts, and started trying to say words, for starters. He still looks funny when he walks, and he still mostly makes vowel sounds when he talks, but that doesn't stop me from being incredibly proud of his accomplishments. He FINALLY will try to repeat words that you say to him (just new in this past week). It's the funnest game for me--Caleb, say mama: "Aaah!" Say dada "Aaah!" Say Papa: "Aaaah!" He's even eating better, though he usually only eats well at about one meal a day. Low appetite, but when he wants to he can feed himself well with a spoon or fork. Or his new favorite: picking up a bean burrito and biting it from the middle. He is such a clever boy, and when he wants to be he can be incredibly affectionate which just sweeps me off my feet. I love the sly smile he gets when he has a good [or bad] idea or just before he kisses someone. I love watching him sweep and rake with Papa (my dad) and do anything else he sees Papa doing. I love how enthusiastic he is about helping with laundry or dishes. I love that he has grown to love his little brother. Every day I can't believe how truly blessed I am to have him as my son. And God is definitely using him to stretch our faith and to bless his grandparents! Thank you, Lord.