Tuesday, June 3, 2014

Still Here....

      I'm still here....just crazy busy. I couldn't believe when I looked at my blog and saw that my last post was in March. We have been so busy! I am in a constant state of confusion about what to do next fall, looking at jobs, looking at our options if I do decide to go back to teaching full-time, worrying about what would happen with Connor's preschool situation if I go to work; fluctuating between wanting to go back and knowing it makes more sense to stay home one more year. I just keep hoping the answer will land in my lap one of these days (anyone want to call and just offer me a job I can't refuse??? Anyone???)

     Now that Connor is done with preschool, we had NOTHING on the schedule today. Ever since I went back to teaching in February, we have had very few (if any) days with nothing on the schedule. It is an absolutely gorgeous day, so the boys and I decided at the last minute to go to the zoo. Bryce loves going to the zoo now, and it is so fun to watch him be aware of the animals and want to be included. He is not happy just sitting in the stroller the whole time anymore! Connor is reading really well now, so he had to stop and read all the signs to me as we passed them. For these reasons, the zoo was a different (and more fun!) experience today. It's so enjoyable to watch these boys grow up!

     It's hard to believe, but Bryce will be two in just two short months. As much as I have every intention of treating Bryce just like any other kid, I have realized many times lately that I don't hold the same expectations of him as I did of Connor at that age. I hate it, but it's true. I know it's because he isn't capable of as much as Connor was....he isn't walking or talking, so I can't possibly expect the same things of him. But, I have so much guilt about not giving him credit for what he DOES know.  I hate that I underestimate him...the exact thing I say I don't want people to do.

     He has gotten good at reminding us of his age lately....you know, like throwing fits.....and refusing to do things we want him to do.....and fake crying for sympathy....all those fun two-year-old behaviors. I always tell him, if he wants to exhibit the negative behaviors of a two-year-old, he better start working on exhibiting some of the positives too :) I want to hear that kid say "mommy"!

     Today at the zoo, I had a great moment of pride in Bryce. Every time we saw fish (which is many times throughout the course of the zoo), I would make Bryce do the sign for "fish". He loves fish, so he was a fairly willing participant in my sign language lesson :) When we got to the penguin exhibit, one of the penguins was swimming back and forth in front of the glass. Bryce looked at me with a big grin on his face and signed "fish"! I realize that a penguin isn't a fish, but it certainly looked like one, swimming back and forth like that. I was so proud and excited....that was not only communication, but recognition as well! He wasn't just mimicking me....he saw that thing swimming and knew what it was! This may not seem like much, but to me, it was yet another reminder that he knows a lot more than we realize. It's so fun watching him use more and more sign language--and he always makes sounds while he does it, so I know the connection with oral language is there.

One funny Connor quote before I go--

 C: "Mommy, do you know where coffee comes from?"
Me: "Yes, it comes from coffee beans....from a plant."
C: "Yeah, and it comes from caribou too."

I guess he read the Caribou Coffee sign that we had just passed. That is kind of misleading, isn't it? :) Having a kid that can read is a whole new ballgame....how can we possibly hide anything from him anymore?!?!

Take care, and enjoy the weather!

xoxo, Julie

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 :)

Julie

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 determined...it 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


    


Friday, January 31, 2014

Hard Day

Today is a hard day. As I type this, Mike is moving our dog, Bauer, down to his new home in Omaha. Getting rid of Bauer is a decision I've been struggling with for a while now, and I finally made up my mind about a month ago.



Bauer is such a good and patient pup. He is only 11 months older than Connor, and when that baby came home from the hospital, Bauer instantly outgrew his naughty puppy phase and stuck to that baby like glue. Bauer is present in most of Connor's baby pictures.  He tried to lay on Connor multiple times, which led me to believe he thought of Connor as a litter mate :)




Although he's not quite as attached to Bryce in his older age, he lets that boy crawl all over him, tug on his lips, and pull his tail. I never once worried about him snapping at my kids. He is so sweet-natured.



The problem was us. Bauer is a Black Lab/Springer Spaniel mix. Black Lab + Springer Spaniel = Lots of Energy. A dog like that needs to get out for walks every day. He needs to be able to run and play. Bauer didn't get that with us. He is big and strong and difficult for me to walk. Walking him with a stroller was pretty much out of the question. With Mike and me working opposite schedules for the past year and half, there was even less time for Bauer. Without proper exercise and attention, Bauer's anxiety caused him to bark constantly and drive me (and all the neighbors, I'm sure...) insane. He started doing some naughty things he hadn't done since he was a puppy.

As Mike's work travel schedule intensified, so did my frustration with Bauer. He deserves better than to be ignored and yelled at. He deserves to be appreciated, and for me he was just one more mouth to feed and one more thing demanding my attention. My patience these days is thin, and unfortunately, our sweet dog got the worst of me.

My wonderful sister, Molly, and her husband Brett have been thinking about getting a dog anyway, and volunteered to take Bauer. They don't have any kids yet, have a nice fenced-in back yard, and genuinely WANT a dog. They can't wait to get him in shape so he can go running with them. Running!

I know it's going to take a while for poor Bauer to adjust to his new home, but I really think it will be better for him. I am feeling really sad today, because not only did I fail as a pet owner, I caused my husband and sons the pain of losing a pet. If it were up to Mike, Bauer would still be ours. It was 100% my decision, but Mike supported it because he wants me to be happy. I appreciate that so much, but today is still a hard day.

I never would have given him away to someone I didn't know, and I truly believe Bauer will be happier with Molly and Brett in Omaha than he was here. We will also be able to see him anytime we go down to visit. Here's hoping he adjusts okay. We'll miss you, Bauer boy!


Monday, January 27, 2014

I'm Ready....

It's official. I'm ready to go back to work. I know I'm fortunate to have this time with my kids, but I am at the point where I feel like I'd be a better mother if I wasn't with them all the time. I need time to miss them. I need to appreciate my time with them. I know there are so many mothers who long to be in my position, and I feel horrible, but it's not for me. It's not even the kids, it's the staying home. I feel claustrophobic and bored.  I miss being around my colleagues. I miss having time to be just ME instead of MOM. I feel like I've lost a big part of my identity. I know I'm the world to those two little boys, but don't feel like much outside of these walls.

I was looking through old posts and found this one from last May. I was already itching to go back to work back then. Here we are almost a year later, and most days I feel like I'm just in survival mode. It's heartbreaking, because I feel like I'm not the happy, complete mom they deserve to have.

So why don't I just go back to work? Because we literally can't afford for me to go back to teaching right now. Until at least one of the boys is in school (out of daycare), we'd be worse off than we are right now. With the cost of preschool and daycare, we'd have less money than we have right now, and that can't happen. It's pathetic how little teachers (especially parochial school teachers like me) get paid. It's pathetic that someone can want to work so bad it hurts, but can't afford to work. How backwards is that?

In order to get back to work, I'm also considering working in a different field...one that would pay better. BUT, I feel like teaching experience is so unique I'm not qualified for any other kind of work. The thought of working in an office or corporate setting is so foreign to me, it's scary. I've always said if I did any other kind of work I'd want to be a trainer (the corporate kind, not the physical kind...haha) or a retreat leader of some kind....a position where I could use my teaching and speaking skills. I have searched for these types of positions, and don't seem to have the experience they are looking for....although many do list Education as an acceptable degree.

If anyone reading this works for a company or corporation with a training department and could maybe help me out in this area, I'd appreciate it. It would be fun to try something new. I feel like this would be the perfect time to do it, when I don't have a teaching job I'd be giving up.

If the right job comes up, I'll have to see what we can do to work it out. If no good opportunities present themselves, I'll have to survive another year and a half at home. In fall of 2015, Connor starts kindergarten and Bryce will be in preschool five mornings a week, so child care will become much more affordable. In the meantime, I'm just praying for answers. Praying a job opportunity will come my way. Praying we'll find a way to make daycare, preschool transportation, and preschool tuition work. Praying I will find fulfillment in whatever situation I find myself in.

I know that this time with little ones is hard and doesn't last forever. I know that things will get easier. I know I will long for these days when the boys grow up. Right now, though, it's hard to see that light at the end of the tunnel. I appreciate this blog space as a way to "let it all out". Thanks for allowing me to vent.

Stay warm everyone! This winter has GOT TO GO!
xoxo, Julie

Saturday, January 4, 2014

Surgery Success

It's been a month now since Bryce had his eye surgery, but with the craziness of the holidays, I haven't gotten around to blogging about it.

His surgery wasn't scheduled until 11:30 a.m., so we started the day with me pumping him so full of jell-o that he was spitting up orange....he couldn't eat solids, but was allowed jell-o up until 8 am, so I made sure he had plenty of that!

He was such a happy boy at the hospital...he thought the crib they put him in was a play pen, and he loves getting attention, so he was a happy guy. Here he is, pre-surgery:


 
 
He remained happy the whole time before surgery, although about an hour before he kept signing the word "eat". He had just learned the sign a couple weeks before...just in time to break my heart because I couldn't give him anything before surgery!
 
 
Mike and I decided we didn't want to be with him when they put him under....it would just be too hard to see him that way. The anesthesiologist's nurse just carried him down the hall. He doesn't really have separation anxiety, so he didn't even cry; he just kind of looked at us like, "are you coming??".
 
 
The surgery took just long enough for us to grab some lunch in the cafeteria. The doctor came in and said it went perfectly, and that the muscle was HUGE like it had gotten lots of exercise. Bryce is such an observant kid, those eyes are always moving!
 
 
Between the anesthesia, morphine, and Tylenol they gave him, it took a while for him to wake up. He needed to prove he could hold liquids down before we could leave. We finally stirred him enough to have a bottle of juice. He was trying so hard to be his normal, happy self, but then he would get a druggie-look on his face and drift back to sleep. Here is all drugged up:
 
 

 
 
He slept the rest of the day and woke up the next morning looking great. On the second day after surgery, the swelling set in and had me a little worried. The doctor didn't say much about swelling, just redness. Here he is at the peak of the swelling:
 



Notice how straight his head is already, just two days after surgery?? It took him a few days to re-adjust his vision, but it was so rewarding to see results almost instantly. I am so thankful we did the surgery while he was still young and resilient, and before it had any lasting affects on his neck and/or vision. He recently had a post-op visit with the opthamologist, and he said he couldn't ask for any better. Everything looks great.

I am so thankful that Bryce had a knowledgeable physical therapist who recognized that his head tilt was NOT torticollis, but ocular in nature. I'm so thankful he had a knowledgeable doctor who was able to pin-point the problem and correct it so well. I'm thankful I have a happy, easy going baby who made the day of the surgery as painless for Mike and me as possible. And most of all, I'm thankful for a baby who can finally hold his head straight!

He has been developing like crazy lately, but that's a whole 'nother post. Stay safe during this bitter cold spell, friends!

xoxo, Julie