Today Luke is turning 1 years old at exactly 11:31am today. He went from 7 lbs. 10 oz. to 21 lbs. 7 oz. On average, they say that babies triple their weight by the time they are 1 year old, and breastfed babies are a little lower than that. So Luke is doing great! He is just about to get his first teeth- 2 lower middle teeth! We can see them peeping through. I think that’s why he wouldn’t nap until 4pm! And I thought it was because he was excited about his birthday! Tonight, we gave him some boiron teething remedy and it helped him relax and get some good sleep.
Luke has been transitioning to sitting from belly lying the past few weeks now and moving from belly to quadraped for the past month now. He loves to rock back and forth on his hands and knees. He loves to do this in his crib at bedtime for some reason. Probably because I keep trying to get his recent achievements on video! He is still not crawling yet, but can scoot backwards really well! He often gets stuck in the corner of the room and wonder how he got there! If we can just get him to put that energy in moving forward, he will be all over the place soon!
We already had a first birthday party for him during winter break. We invited some people from our local support groups, friends, family and some of Kaden’s friends. We did it at a Pump it Up, which was fun for all! Even Luke got down on the dance floor… literally. Seeing his party was so close after Christmas, we asked people to either donate to our local down syndrome support groups or contribute to Luke’s aqua therapy (more on that to come). Everyone had fun and all the kids had a chance to release some energy during winter break. I’ve posted some pictures below.
Luke loved his first cupcake ever – gluten and dairy free of course. He dove right in and demolished the thing, practically polished it off. To see the video, click here. This kid loves to eat and it always puts a smile on my face. Our older son was never much of an eater and had texture aversion so he was on purees until 1.5-2 years old. So it’s nice to see that Luke enjoys eating and self-feeding. In fact, that is one of the reasons why baby led weaning is so beneficial to children with down syndrome, as well as other children. It strengthens the muscles in their mouth and tongue, it gives them sensory input and it helps develop gross and fine motor skills. I’m so glad we have such a great speech therapist who is so experienced with children with down syndrome to help introduce this concept to us. I would have never have considered it otherwise. And it is working great for us!
So what have we learned the past year?
1.) Luke is our baby, first and foremost. He is his own little person who will do things when he wants to and when he is ready. He is a laid back little guy but more shy and doesn’t warm up to the camera all the time, although that is probably more due to the fact I’m always trying to take pictures of him with the flash going off all the time. He likes to work on his milestones in the safety of his cribs away from the public, although little does he know that we still spy on him 🙂 He does smile often for the monitor so maybe he does know we are watching him!
2.) Kaden is his older brother and needs to know he is very much loved. Kaden is an affectionate child and I love that about him. I know he won’t stay this way forever, so I try to cherish those times now. Every night, we cuddle up and read 3 books, and both of us look forward to this time. I tuck him into bed and give him lots of kisses. At the door, we blow multiple kisses to one another and catch each other’s kisses as our final farewell. Every child needs some special alone time with their parents on a regular basis, especially if their sibling is a baby who has many demands. I’m not perfect and there have been times when I’ve been too tough on him. It could be cultural and the fact that my parents were hard on me as I’m the eldest. But in any case, it’s been a rough year for Kaden and he is my special guy. I’m so very proud of him and he is a wonderful older brother to Luke.
3.) Our family comes first before anything else. I used to feel badly about not attending every party, every family event, school events, local support group events. But Luke was not a good sleeper, and I was exhausted and overwhelmed for a good part of this year. Then, we had rounds and rounds of colds and flus since late October. So I really don’t know where this year went. Sometimes, I would just let Bob take Kaden somewhere and stay at home with Luke. But we needed time to just hang out at home with our family too. I also cut back on volunteering at Kaden’s school. I just couldn’t do everything anymore. So I just learned to say “no” and put our family (and myself) first when we needed to.
4.) I’m not ashamed of Luke’s down syndrome. This one took me a little while and sometimes I still struggle with it. But I tell almost everyone we meet that Luke has down syndrome. Some people don’t know how to act, some show pity, some ignore what I just said. Other times, it will strike up a conversation about someone they know. I don’t mind people knowing and I do it with the chance maybe they may share something helpful. As long as Luke isn’t bothered by my mentioning it, I will probably continue doing it. But maybe I need to find a way to be more suave about it. I don’t mean to make it a big deal because it really isn’t. And sometimes people act shocked because they didn’t know. I think the fact that I’m Asian may make it harder for people to see it. Personally, I don’t think Luke looks a lot like me, but neither does Kaden. Must be that strong German and Italian blood that Bob has lol! But the fact that other people may not realize it is the other reason why I do it. I want to educate people that down syndrome may not be what they expected. It gives them a chance to ask me questions should they want to. If they encounter an experience in their own lives in the future, then maybe it won’t be so scary for them. I know I was fairly ignorant about down syndrome before Luke. But if I had met babies like Luke beforehand, maybe the idea wouldn’t have been so scary for me when I first found out about his diagnosis.
5.) Let things go. This has always been hard for me as I tend to second guess myself often or saying “what if” or rehashing what could have been done differently. But the past is the past so I have to learn to let it go. People make mistakes, including myself. Could I been better with Luke’s therapy exercises? Could I be a better and more patient mom? Have I made mistakes or missed out on opportunities? All yes. But can I change the past? No. So learn from your mistakes and missed opportunities and try to do better in the future. And that’s the other reason why I’m here doing this. Let others learn from your experiences in hopes it will be helpful to them.
Luke and Daddy
Before and After Pictures of Eating Cake (where’s my cake to where did it all go?)
Luke on the Dance Floor
Kaden on flag mountain