Saturday, March 22, 2014

This Kind of Love....

      When I saw that the International Down Syndrome Coalition (IDSC) was asking for pictures of people with Down syndrome and their loved ones, I knew I had to submit a picture of Bryce with the person he loves most....his brother! The campaign is called "This Kind of Love", so they also asked that we complete the phrase, "this kind of love......"

      As you can see, I chose to complete the phrase with the word "enviable". When we got Bryce's diagnosis just after his birth, two thoughts went through my head (in this order): Life as we planned it is over, and what will this mean for Connor?

     I quickly realized I was envious of Connor. He would look at the baby and just see his brother, not the neck roll, almond eyes, and short limbs that I saw in those difficult first days.

     At this point, Connor has certainly heard the words "Down syndrome". He knows that Bryce has teachers and therapists that come to our house. I have tried to start to explain that Bryce has it, which means he needs a little more time and practice to learn new things. Connor doesn't want to hear about it. He just wants to play with his brother!

     Bryce looks at his big brother, and his eyes light up. Connor can do no wrong as far as Bryce is concerned. Bryce can do LOTS of stuff wrong as far as Connor is concerned, but he loves him anyway. It is so fun to watch their relationship grow as Bryce becomes more and more capable of interaction. The love and pride and resentment Connor feels for his little brother is so pure and normal.

     Someday, Connor will feel resentment for Bryce because of his Down syndrome. He will feel protective of Bryce because of his Down syndrome. He will be extra proud of Bryce's accomplishments because of his Down syndrome. Someday he will come home crying because someone made fun of him because of Bryce's Down syndrome. But right now, when Connor looks at Bryce, he just sees his little brother. Wouldn't it be a beautiful world if we all saw people through a child's eyes? That kind of love is enviable.

Friday, March 21, 2014

WDSD 2014

     Happy World Down Syndrome Day! Sometimes I think maybe I talk too much about Down syndrome on Facebook or on my blog. Maybe all of you are sick of hearing about it. I have always known that I do it because I want people to see that having a family member with Down syndrome isn't the end of the world. Anyone who knows me knows I am a straight-shooter. I don't sugar coat things. We are normal, despite Bryce's extra chromosome. He really HAS brought more joy than pain. I want so desperately for people to know this. I have said before, I wish all of you could REALLY know Bryce. I wish all of you could feel the love that oozes out of him. I wish all of you could hug that squishy little body and know that all is right in the world. But I know you can't. I wouldn't understand if it was one of my friends, instead of me. I would probably always feel a little bit of pity, despite trying to understand.

     Today, I read Kelle Hampton's WDSD blog post. (If you haven't checked out her blog, Enjoying the Small Things, you should. She has a daughter with Down syndrome, but rarely talks about it. She's just a cool girl.) She stated perfectly what I didn't know I felt.....the role all of you, my facebook friends and blog readers, play in our lives. What I really hope to accomplish. Here it is:

     "You are the parent of the student in our child’s class—the one we hope teaches your child to reach out to ours, invite her over to play, sit next to her at lunch. You are the employer who we pray sees potential in our child and hires her to perform a job she’ll love. You are the teacher in our child’s classroom, the one we want to work hard to meet our child’s needs and accept the challenge of integrating your classroom to include him. You are the high school student who we fear might not take the time to get to know our child, the coach we hope finds a way to let our kid play, the school board member whose vote matters in terms of decisions regarding our children, the co-worker who might need to practice a little extra patience and compassion in making sure my child settles in to her new job and feels welcome. You are the thinkers and doers and world-changers who can help alleviate fears for millions of parents world-wide and make life better for people with disabilities. That’s you."

     If my bragging about Bryce and desperate attempts to get you all to understand can reach ONE of you in this way, I will have done my job for our little guy. Tomorrow, I hope to share another WDSD blog post focusing on my big boy and the effect all this has (or doesn't have) on him. Have a great day! High five someone with Down syndrome today if you can :)


Saturday, March 8, 2014

18 Months

      Okay, actually, Bryce is 19 months now, but it's taken me a month to sit down and write his year-and-a-half update. Life has been busy around here. I have taken a long-term substitute teaching job for the remainder of the school year. It's just three days a week, and we are starting to settle into a new routine, but things were crazy for a while--having to suddenly find daycare and adjust to being busy every day of the week again.

      Bryce handled the transition to daycare pretty well, but of course got a wicked cold after one day of being there. He was a total bear while he was sick, and I wasn't sure if it was the cold or if he was punishing me for sending him to daycare. Bryce is such an easy-going kid that sometimes I fear we take his nature for granted and don't think about how things may be affecting him. Luckily, now that he's feeling better he was back to normal this week, so hopefully it was just the cold!

      After a very slow start developmentally, once he started, he hasn't slowed down. The child wouldn't even sit unassisted until he was 13 months old, and 6 months later he is crawling, pulling to stand, and cruising around furniture. It's so fun to see him have more control over his body. Things are a struggle for him due to his low muscle tone, but he's so physical and makes everything that much more special. I was always proud when Connor reached milestones too, but there's something so moving about watching Bryce struggle and accomplish things. He is always so proud of himself too!

     His personality continues to develop as well. He is still a pretty happy guy, and it's fun to see a real sense of humor coming through. He knows darn well when he's being silly and when something gets a laugh, he feels the need to do it over and over again (until it's not so funny anymore!). Bryce continues to worship his brother--Connor is the only one who can ALWAYS get a smile out of him, even when he's cranky and sick. Now that Bryce is so mobile, he and Connor can play a little more and watching their relationship grow just makes my heart swell. Connor is so protective of him and despite Bryce being a pest, he always wants his little brother around.

     We are working on sign language, and for a while he was doing a good job with a few signs, but now he's slowing down. I suppose it's because he's so busy focusing on developing his large motor skills right now, and a little guy can only do so much at once! Communication has always been my biggest worry with Bryce. Communication is my thing. It's what I do! The thought that he may not speak until he's three, four, five years old--it worries me. Add his inability to communicate with same stubbornness that helps him accomplish his goals, and it can make things a little difficult for us.We're getting a little worried about the terrible twos that are right around the corner!

      While we have adjusted to the idea of his Down syndrome, the pain and sadness is always there in the background. Most days I'm pretty good at suppressing it, but as he gets older, the developmental gap is widening, and it's getting harder and harder for me. I wish I could afford to buy him a whole new wardrobe, because wearing Connor's hand-me-downs reminds me of the things Connor was doing when he fit in those clothes. When Connor was 18 months old, he could recognize every letter in the alphabet. He could sing songs and follow directions. He could run and climb. Bryce understands so few words, it's hard for him to follow simple commands.  He's 19 months old and can't stand unassisted. I know you shouldn't compare ANY kid to another (especially an exceptionally bright child to a child with Down syndrome) but it's impossible for me to put it completely out of my mind....especially when Bryce is wearing the same clothes Connor did. I love Bryce as he is, and I am so proud of him, but it's hard. I just want him to have everything, and watching him get frustrated because he can't communicate what he wants is very difficult...and I know we haven't seen anything yet.

     It's hard to believe our little guy is on his way to being two! Two years since our lives changed in ways we never imagined. Bryce has been our biggest blessing in a lot of ways and has challenged me and changed me more than I ever thought a child could. I would say the biggest change I have experienced is in my gratitude. I still have moments of "why us?", but then God gives me a little reminder of how blessed we are. The other day, I woke up feeling sad and sorry for myself. Later that morning, Bryce and I pulled into the parking lot at the ECFE building and I saw a dad carrying a wheelchair-type device back out the car. I instantly thanked God for my healthy, capable kids. Yes, Bryce has an extra chromosome in every cell of his sweet little body, but that body functions just fine. Yes, it is taking him longer to figure out how to walk, but he will walk. Some people wake up every day wondering if their child will survive one more day. They wake up to a house full of medical devices and nurses. How dare I feel sorry for myself because I have a child with Down syndrome? I hit the jackpot with that kid.

It feels like Spring sunshine out there today! Enjoy, everyone!

xoxo, Julie