WDSD

March 21st was World Down Syndrome Day. It is a day to celebrate people with Down syndrome each year. Last year on that day, I was probably celebrating getting out of my first trimester of pregnancy, completely unaware that there was such a day. I probably would have wondered why on earth anyone would CELEBRATE Down syndrome. Since Bryce's birth and diagnosis, I have been a member of this club...the club I didn't ask to join and the club I didn't realize existed. I have avoided being a part of the club. I have told myself that so far Bryce is just like a normal baby...that I have nothing in common with these people whose kids are sick or delayed. March 21st ended up being surprisingly emotional. I watched my facebook news feed flood with pictures of little faces like Bryce's. Little faces with flat bridges at the top of their nose....ears low on their head....short arms...big bright eyes...unadulterated smiles. I watched as Bryce's picture was featured right along side these other special kids, and realized I AM part of the club. My child is healthy, sure, but so are many of these other kids. No one else knows how it feels to learn your child has Down syndrome except the other members of this club.

My family and friends have been nothing but supportive. I can talk to my friends and family about physical therapy, delays, thyroid problems....but no one can really understand. I think March 21st opened my eyes and made me realize I need to stop being scared and reach out to others who DO understand. But it is scary. In many ways, I'm having to "face the music" now more than I have since Bryce was born. Now that he's coming up on 8 months, I am noticing a delay. I am getting scared about the fact that some day he's not going to be a cute little baby anymore. Some day he's going talk a little too loudly in a restaurant and people are going to mutter about him under their breath. I am getting worried about how I'm going to deal with it when someone calls him retarded. I always worry about how it will affect his spirit and his brother's life. I need to hear how other people have dealt with these things.

Despite my emotional take on the day, I was also completely inspired and encouraged by the photos and kind words I saw online that day. People with Down syndrome have normal relationships with their families. They can get married. They can work full time. They can live on their own and take the bus to work. They have feelings and thoughts and talents. I was also encouraged by the support. I am referring to an organization called Circle 21, which is a Down syndrome group out of Toronto, but it has members from all over the world. Their facebook page features pictures/captions of people with Down syndrome. About 2 months before WDSD, they put a call out for photos of people with Down syndrome with a sign saying where they are from. I submitted this picture of Bryce:

It was one of the pictures featured on their page on March 21st. I cried everytime I looked at it that day and read all the lovely comments from people all over the world. As of right now, Bryce's picture has 4,834 "likes" and 253 "shares". My boy's sweet smile touched that many people. If you figure each of those 253 people who shared have 100 friends who saw this picture, added to the 4,800 people who "liked" it....Bryce probably brightened over 25,000 peoples' day...even if it was just for a second. The awareness and support is so encouraging. There will always be "haters", but I really have hope that things will get easier for people like Bryce. Even if it's just my friends and family, or my few blog readers, my goal is make people see Bryce as a normal human being. I have gone out of my way since he was born to really look at people with disabilities. I didn't do that before. Working in a grocery store, I have had many opportunities to do this in the last 6 months. There is one customer in particular who has delays and wears a helmet. I always figured he couldn't even talk. One day he came to the service desk to buy a lottery ticket, along with his aide. I made  sure to talk to him and asked him what he would do with all the money if he won. He said he's spend it on pretty blondes like me. Not only could he talk, he could flirt! He even came back to look at my ring finger and feigned being disappointed seeing a ring on it. It made my night, and if it weren't for Bryce, I would have completely overlooked this man.

Bryce's early intervention teachers have mentioned to me several times that they've never worked with a family who had a prenatal diagnosis. While we don't know for sure, this is most likely because 92% of people who get a prenatal diagnosis decide to abort. This breaks my heart. I am POSITIVE that if people were educated and exposed to people with Down syndrome this number wouldn't be so high. While I can't think of a single reason I would ever abort a baby, I can understand their fears and misunderstandings. I was forced to learn about Downs because my son was already in my arms...I had him and I was a member of this club no matter what. It was scary though. The day he was born, I thought life as I knew it was over forever. I was wrong. I am so shocked by the number of doctors who still suggest abortion or adoption for these kids. I have read stories that completely shock me. My doctors and nurses were nothing but absolutely supportive and I am so thankful for that. That day would have been so much more devastating if suggestions like giving up my baby were made. I can't even imagine. And it's still happening. A lot, apparently. I am wondering if there is a program in place in which families who recieve a prenatal diagnosis can talk to people like me...people already in the club who could assure them that life will not be over. If there isn't, there should be. 9 out of 10 sweet babies like Bryce never even given a chance to live! It's heartbreaking.

This ended up being a little more rambling and emotional than I intended, but it's been brewing for a week now. I still haven't figured out exactly what my new calling is--why God gave me Bryce--but I'm praying that I figure it out sooner than later. I think my first step is to stop avoiding "the club". Once I work up the guts, I am going to attend some kind of event or meeting. When I do, I'll be sure to let you all know how it goes.

Happy Easter everyone!

xoxo, Julie

It's been a while....

Hi Friends--
   I've been having a bit of a blogger's block the past few weeks. Usually, by the time I get around to writing a post, I've been forming it in my head for a few days. There is usually something on my mind that I need to spit out. Not lately. That's probably a good thing. It probably means I'm adjusting to everything--staying home, being a mom of two, being Bryce's mom.

   We are so busy. Friday is the only day of  the week that we are just home, all day, with no plans or interruptions. Even though I'm now mostly a stay-at-home mom, I actually do work about 25 hours a week. Those 25ish hours are over the course of 4 days. Add that to physical therapy, ECFE, and early intervention teacher visits, and we have plenty on the schedule each week. I was so worried about being bored at home, but instead I am busier than I was when I was teaching. Of course, I didn't know I would have a child that needed PT and EI :)

     Connor is such a little character and keeps me in awe constantly. His imagination is crazy. I'm so glad he's able to entertain himself, but some of his creativity has been getting on my nerves the past month or so. I'm trying my hardest not to squelch it, but sometimes I'm just not in the mood to respond to whatever character name he decides to call me that week (so far I've been Timon, Dory, Lightning McQueen, Crackle the Dragon, and the color purple) or say what he tells me to say (so that he can basically have a conversation with himself). I finally told him yesterday when he decided my new name was Dumbo that we are just going to be ourselves for a while. It's so nice to hear that little voice say "mommy" again!

    He is also so stinkin' smart. I really need to start working on reading workbooks with him. He is fascinated by literacy (maybe he has some of his mother in him afterall!). He has loved letters since he was about 15 months old, but he now is really getting interested in putting the sounds together and is actually pretty good at sounding out short, three letter words. It's very cute listening to him try to sound out longer/more difficult words. It really reminds me again how difficult the English language is...."We don't make the 'e' sound in this word", "o and u combined make this sound", etc. We really need to stick to sight words, but he is just so ambitious :) He also knows that we read left to right, pause at periods, etc. It's just so natural for him. I said a long time ago I'd have him reading before kindergarten, and now I'm even more confident in making that statement. As a teacher, watching his language and literacy develop has been the most interesting thing I've ever experienced.

     I have come a long way in my acceptance of Bryce's DS. It still stings a little when I see babies his age or younger doing things he can't do, but I've gotten better at giving myself pep-talks to get through it. When we first learned of his condition and were studying up on it, the struggles these people often have with language was (and still is) one of my biggest concerns. As I listen to Connor's vocabulary grow and watch him learning to read it scares me that Bryce most likely won't get there for a long time. He certainly won't be there when he's three. Language is just such a big thing for me. I just hope and pray that he is able to communicate effectively and that I can accept that it may not be his strong suit.

    That being said, Bryce is doing AWESOME. I mentioned that he's been going to physical therapy for his torticollis. He has gotten so much better! We actually learned that his head tilt is most likely caused by something ocular. He went to the ophthalmologist a couple weeks ago and the doctor noticed a little muscle weakness/misalignment in his right eye. Most likely there is a little blurring or double vision when he looks certain ways, and he has corrected it by tipping his head to the side. Unfortunately, Bryce wasn't being consistent enough for them to tell exactly which eye muscles are the problem, but at least we have an answer. The PT had suspected that was it because his neck/back/shoulder muscles were so easily corrected....the muscle tightness is a result of the tipping, the tipping isn't caused by muscle tightness.

    Our little champ has gotten so much stronger in the past few weeks. He is holding himself up so nicely in both a supported sit and when you hold him upright. I've been waiting and waiting for that head control and we've finally got it! He is also trying to belly crawl already. His little legs have been trying to go for a couple months, and now he is even alternating knees like an actual crawling motion. Unfortunately, he still face plants, though, and his little butt goes up into the air. Our next area to work on is getting him to bear weight on his arms while on his tummy so he can get the upper body crawling movements down. He is doing so well physically that we can start going to PT only every-other week now. I'm so incredibly proud of him and never take his health for granted. I'm sure a lot of kids with Downs have slower development because they have so many health problems to deal with. I can't say enough how blessed we are. He really isn't that far behind the normal curve for motor development, especially when you look at his adjusted age (5.5 months). He is just a rock star.

     I give Connor a lot of the credit for Bryce's development. That baby's eyes are glued on Connor at all times, and whenever Connor is doing something physical, Bryce will start kicking and moving his arms like crazy--he wants to do it too! I'm so proud of both of my boys!

No amount of clapping, quacking, or name-calling from me could get him to take his eyes off his big brother!

   Well, I guess I had a few things to say afterall :) Take care everyone!