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.

special needs

I guess nobody ever envisions themselves becoming the parent of a special needs child. When I was still in Taiwan and starting to notice the signs that my little boy was 'special,' many people tried to comfort and reassure me that he was probably just on his own timeline--nothing to worry about. I know those people were trying to comfort me and help me not worry too much, as mommies tend to do. However, it made it all the more shocking when it turned out that my fiercely loved elder son is indeed delayed in many areas. "Global delays," is what they called it, to indicate that he is delayed in about every area. Since that initial shock I have been doing a lot of thinking about what this means. Well, only in a general sense because after these first few months of knowing something is wrong, we still don't have a real diagnosis for my son. It appears his delays probably stem from a medical condition that is very enigmatic in nature. Our doctors have run so many tests and still haven't found a lead. Apart from the medical problems, I've been thinking about the paradox of how we as humans desperately want to be special, yet mostly all want to be normal at the same time. We especially want our kids to be normal, which is why I believe so many people persuaded me that my son was 'perfectly normal.' But as it turns out, now that I know he has special needs, do I love him any less? Not a smidgen. Do I think he's any less smart or clever? Not at all. Is his value as a person in any way undermined? Not in the least. So why do we worry so much about making sure our kids are normal. I've come to embrace the special, because that's what my little boy is. And he is SO special to me--words can't describe. I love him more and more each day as we discover each other and as I get to watch him discover the world. He is a really sweet and creative boy. One of the hardest things with all that's going on has been accepting that for now--maybe for long term even--I don't get to know what's going on in that little body of his. God knows. If He intended for me to know, I would know. I have to rest in that and be okay in that. God created my little Caleb and he knows and loves him oh so much more than I do. And He has great plans for Caleb. Plans He made with Caleb in mind. Plans that will not be thwarted by developmental delays or low platelets. Caleb is special, my special little boy. And I cherish him.

Isaac's Dedication

Well, yesterday we dedicated our baby Isaac Joshua to the Lord. Here is the blessing I read to him, though I forgot to have it translated into Chinese. Oops. Dear Isaac Joshua, The name Isaac means laughter and it is our prayer that you will bring smiles, laughter and the Joy of the Lord with you wherever you go. Already you have brought so much Joy to our family, and your sweet smiles and giggles are a huge blessing to us. God hand-picked you for our family and hand-picked our family for you. You and your brother Caleb share the same middle name, Joshua, and we pray that you will grow to become good friends and men of great Faith. Isaac, you are a strong, easygoing and friendly baby. We can’t wait to see how God will use your life. We will do our best to teach you to love God and follow his ways. We love you with all of our hearts, Your Mom and Dad Our dedication was to take place right after worship and we pulled up to church just in time. Not in time, however, to change Isaac's poop explosion that he decided to create in the car. Or his milk barf. Just a little something extra for the dedication. The funny thing is that Caleb also had a poop explosion just before his baby dedication. Good thing I've learned to bring an extra outfit. Always an adventure! We love you Baby Isaac

More than Happiness

Want to know how to discourage a new mother of two? When she returns from an outing with both of her babies and her large double stroller tell her that you've noticed that her older son is so unhappy these days. Let her know you never see him smile anymore. That's how the guard of our building has chosen to greet me recently. The other day after such an exchange I found myself riding up the elevator in tears. But God met me in that moment. Sometimes it's hard to measure how good of a job you're doing when you're a mother. It's tempting to measure it by the happiness of your child. When he is smiling and laughing you feel like a good mother, but when he is moody, crying about one thing after another, and unhappy for a good portion of the day, you must be a bad mother, right? Wrong, as God reminded me. It's about more than happiness. God's ultimate goal for my son, and for you and me, is more than happiness. James 1:2-4 tells us to "consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything." God's desire for us is to develop our character into the likeness of Christ. This is not to say that he doesn't want us to be happy. He wants us to live life to the fullest (John 10:10)! But He knows what is best for us and values maturity of character and fruit that will last over temporal happiness. A good parent will naturally desire for his/her child to be happy. But a good parent realizes that the goal of godliness for his/her child comes above the goal of happiness. If it was all about happiness then it would make sense to give in to my child's every desire and give him everything he wants. But it's not all about happiness. We all know what happens to the child who gets everything he/she wants. It's not pretty. That's not what I want for my children and that's not what God wants for me. I have been learning how this applies not only to my kids but to me as well. Even though it should be obvious, I had forgotten or lost sight of this truth. I was struggling in my marriage and wondering why God wasn't making it easier. When I prayed it always seemed to get harder and I wondered why it felt like God wasn't helping me. Finally I realized that God was trying to develop my character. When I prayed, he provided challenges, aka opportunities to grow. Opportunities to obey. I failed. Almost every single time. But now that I see things differently, I am ready to try harder. I am no longer asking for God to make it easier, but for him to give me the strength to do the right thing when the trials come. Because they will. It does not say anywhere in the Bible that when we pray, God will take all trials away from us. But it does say that He will never leave us (Hebrews 13:5). And 2 Timothy 3:16-17 tells us that scripture equips us for every good work. I want to be the kind of wife and mother that is equipped to do good works that will bless my family. God is helping me become that wife and mother. Caleb continues to be moody and opinionated, but he also has a super sweet side to him. Recently he has become much more affectionate with me and will even give me kisses--sometimes when I ask for them and sometimes all on his own. He is struggling a bit to find his place in the family and also beginning to assert his independence more. As a mother I have the difficult job of knowing when to say no and when to say yes. I try to say yes as much as possible in order not to crush his spirit, but I still have to say no plenty of times throughout the day. Pray for me to have discernment, perseverance and patience as Caleb's mother. Pray for me to be a mother that encourages creativity and gives my children the space they need to grow and learn. I want to work hard to provide a nurturing environment, positive memories, and fun experiences for my kids. It's a hard job, but I'm so glad God hand-picked me to be Caleb and Isaac's mom. What a joy!

Life with Two

I am so loving my life with two littles. They are both so precious in their own unique ways. I'd also like to say I am really thankful that I've had enough help from hubby, mother-in-law, and church friends that I can actually enjoy life with them instead of pull my hair out every day. Isaac continues to be the best baby on the planet. He sleeps well, eats well, smiles a big goofy grin and loves having conversations with people. I am so smitten. Caleb is struggling more with the transition to a family of four, but I have seen a lot of improvement in him. And God's grace is sufficient--every single day! Thank you, Lord. He provides everything we need: emotionally, spiritually, and physically. I am infusing my days with the boys with praise, joy and thankfulness. I fill the days with singing and teaching them about God's blessings. We are incredibly blessed. And when everything is going wrong and both kids are crying or Caleb is trying to hit his head on the ground, I praise Him. Having two littles is difficult at times, but I know this phase will pass quickly and I'm trying to enjoy the moments. I'm grateful to God for his help and guidance each step of the way. In Chinese when a couple gets married they combine two of the characters for joy and call it "double happiness." I would like to combine four of the characters for joy--quadruple happiness--that is my new family!

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