Family Time

Hi Friends,

   It's been a while! Happy Summer!

   Between Mike and I working opposite shifts and his work travels, our time as a whole family is very limited. It's hard for me to be home alone with the boys all day and then go to work, and it's hard for Mike to have to jump right in to dinner and bedtime by himself after a long day at work. I keep telling myself that it won't be forever, and our boys are so blessed to always be with one of their parents or grandparents. Despite all that, the truth is, we are all happiest when the four of us can all be together.

    Last weekend, I had the opportunity to travel to Madison, WI to work at The Color Run, which my sister-in-law directed. It was really fun, and a nice little getaway. Upon my return, I worked every evening from Sunday-Wednesday. Knowing that Mike would be leaving again for a week of work travel, we decided we needed a little family time so we took a quick trip up to Duluth on Thursday and Friday. I love Duluth in the summer time, and the time together was just what the doctor ordered.

    We picnicked by Lake Superior, walked out to the lighthouse, put our toes in the lake, checked out the train museum, swam in the hotel pool (oh my, does Bryce LOVE water!), went out for pizza, slept well in the hotel, went back to the lake, went to the Great Lake Aquarium, and saw a big ship come through before grabbing lunch and heading home.

 

        Usually when Mike and I get the opportunity to travel, we don't take the kids along. Other than Wisconsin and Nebraska to visit my siblings, Connor has never really gotten to go anywhere. It was so fun watching him experience new things, and he said multiple times how nice it was to be together as a family. What a blessing this little getaway was!

   I hope everyone else had a wonderful 4th of July and is enjoying the beautiful summer weather! Take care.

Staying Home

Hi Friends,

    As the school year draws to an end, I find myself feeling a little lost again. As I mentioned when I first decided to take a hiatus from teaching, teachers live by a different calendar than other working adults. The first month of the year is September, not January! Even though it has now been a whole year since I've been in the classroom, I find myself still going by that calendar. I am feeling the excitement and anticipation of the end of the school year as if I was still there. The last days of school were always long, but also some of my favorites. I was the type of teacher to party the last couple days--not cram in a bunch of tests and last minute assignments. After all, I wanted to walk out at 2:10 on the last day of school and not look back again until September as much as the kids did!

   Even though I was happy at my job, I couldn't help myself but to look at job postings every spring. This year is no different. I looked the other day, and let me tell you....there are a few jobs I am tempted to apply for. I even ran some scenarios through my head, but it always comes back to money. Unless these jobs are miraculously going to pay FAR better than my last job, we're back to the reason I left in the first place. I'm not willing to sign 2/3 of my paycheck over to a daycare provider. We also have the added complications of preschool for Connor next year (transportation), Bryce's PT and EI schedule, and the fact that I can't imagine sending Bryce to daycare, even though I'm sure he'd do just fine.

    This year of stay-at-home motherhood was probably the hardest year of my life. Dealing with two little boys is far more exhausting for me than dealing with 25 middle schoolers, believe it or not. I am still not convinced I was made to be a full-time mommy, but I also realize how blessed I am to have this time with my kids (even though some days I have to remind myself CONSTANTLY). There are days that I love being with them during the day. I am so thankful I was able to do music and ECFE classes with Connor. I love doing things like going to the zoo, or story time at the library. I love making Mickey Mouse pancakes on random Tuesday mornings. Those are the times I realize how lucky I am, and how much I love this time with my little ones. But it was a LONG winter, and there were days that we are lucky everyone survived. There were days it was miraculous I had any hair left in my head. There were days I wished with all my might that I was working.

    Just as deciding to leave my job was a huge internal struggle last year, deciding what to do next is my current struggle. We really could use some more income. Should I try to get a better paying job in a different field? Should I try to get a job at a public school, which would pay slightly better? Should I stay home until Connor is in kindergarten as I originally planned? I don't know.

    When Connor randomly tells me I'm beautiful, or that he loves me "the whole world", or Bryce smiles at me or gives me those big open-mouth kisses, the answer is pretty clear. When we're on our 6th poopy diaper or 4th temper tantrum of the day, the other answer is pretty clear. I guess all I can do is pray the answer will come to me. Maybe someone will magically call and offer me a REALLY REALLY good paying teaching job that I won't be able to resist :) While I wait for that to happen, I guess I will count my blessings (and poopy diapers) and enjoy the "summer vacation" that will always be "summer vacation", whether I'm still in the classroom or not.

9 Months!

      I cannot believe our little man is nine months old! I feel as though his first year is going soooo much faster than Connor's did. I think it's a combination of a lot of factors: his first month spent in the hospital, living in a cloud of shock and fear for a while, being busier with two kids, and the fact that he seems younger because he's not developmentally doing what most nine month olds are doing. The fact that we will be celebrating his first birthday in less than three months blows my mind. I realize that in the life and development of a baby, three months is a long time, but I just can't imagine him sitting in his highchair eating cake. I sure hope he can, though!

        Overall, Bryce is still a pretty happy-go-lucky little guy. He is starting to get much more opinionated, though. I have mixed feelings about this...I'm happy he's sharp enough to have an opinion, but missing the baby I could just lay on the floor while I get things done! He is wanting so much more attention and entertainment these days. He is a very social baby! He smiles all the time, has such an expressive face, and has this great chuckle that is coming more much easily these days. Bryce has also started completely melting his mama's heart by giving kisses! He has been giving kisses for a while, but I always just thought it was a reflex, because he would just turn into my face when I gave him kisses....but now, he'll actually grab my face and pull me in for a kiss on his own. Seriously melts my heart. Such a sweetie pie!

      Even though I was (falsely) hoping he would defy all odds and be the one person with Down syndrome who didn't have any issues or delays, I have been having to face the music a little bit more lately. I have been encountering a lot of frustrations and worries these days. Up until a month or two ago, I could say Bryce wasn't that far behind--especially when you looked at his adjusted age. But now, his adjusted as is almost 8 months and he physically is more like a 5-6 month old. At the end of March, I was so excited because it seemed as though he was figuring things out. He has started rolling all over the place and has made the connection that he can get where/what he wants by rolling and pivoting. He gets his knees moving like he's going to crawl, but is still not pushing himself up with his arms. He just does not want to support himself with his upper body. Six weeks ago, I was sure he'd be belly crawling by now....but then we hit a few rough patches that slowed him down. In mid-April, Bryce got the chicken pox and wasn't feeling well for a couple weeks (although he handled it like a champ!), and now he's been working on sprouting his first tooth. His physical therapist assured me that there will be times like this--if his body is busy with things like that, he's not going to have the energy to make progress developmentally.

    I don't want to use the word "frustrating", because he can't help it, but I'm just getting a little anxious. I knew this day would come, but it's still hard to face. It is really hard for me to watch him wanting to do more, but can't. It's like he's ready for more stimulation, but without being able to sit up, he is pretty limited. His inability to sit has been causing some difficulties for me--particularly when it comes to baths and eating. He is way too big for the baby bath sling, but he can't sit up well enough to bathe him any other way (at least not with only two hands!). He also is starting to be more interested in finger foods, but can't/won't sit up straight enough in his highchair to practice feeding himself.

     I have been consulting a book called "Gross Motor Skills in Children with Down Syndrome". It is a great resource because it has activities (with pictures) to encourage all the different developmental milestones. In the book, it explains that there are two different kinds of kids--observers and motor-driven. Bryce is definitely motor driven. He has never sat still in his life (I swear I could feel him moving by the time I was about 12 weeks pregnant). He even moves in his sleep! While this is good in some ways, it is not good when it comes to sitting. He has no interest in it, and the book explains that kids who are motor-driven feel restricted in that position. He can't move like he wants to if he is confined to his butt :) It would just make my life so much easier if he would sit up!!

    Even though I've been feeling emotional about him lately, I am coming around to accepting that he will do things in his own time. I've gotten better about comparing him to other kids--although it still stings to see pictures of younger kids sitting up--but I am just ready for him to be able to do more. I am thankful I get to have a baby for longer, though. He is such a sweetheart and I am so proud of him. His smile is still magical and the way that he watches and notices everything around him still gives me hope that he'll be pretty high functioning. I just think he has some of his father's stubbornness in him and he's not going to do anything until he's good and ready!

   Here's hoping time will slow down now that the weather is getting nicer. I'm not ready for this little love's first year to be over!

smiling through the chicken pox

nine months!

Running on Empty....

Recently, I've been feeling more and more like I'm running on empty. Some days I think I wasn't cut out for stay-at-home-mommyhood, but I'm sure it's just our recent circumstances that have me feeling this way. We here in Minnesota have literally had 6 months of winter this year. With a baby, I've found it very difficult to get outside for fresh air. Our walls feel like they're closing in on me. Thank goodness we've got some 70s in the five day forecast now.

Aside from the weather, I was a single parent for 17 days while my husband traveled for work. Even though I have help from my parents and in-laws, it is difficult being the one solely responsible for the kiddos. The fact that we had two snowstorms (in APRIL!!) combined with Bryce getting chickenpox, and Connor screaming one night with stomach pains didn't make things any easier. I was very proud of how well the first the first 13 days went (a weekend getaway with my mom and sister to help with the kids made a huge difference), but the last few days really burned me out. I have even more respect now for single parents and military spouses.

In the days since Mike has been home, Connor has been sick with a mystery fever, body/joint aches, no appetite and crabby attitude. I don't know how much more I can take. I'm feeling horrible for not enjoying every minute with my kids, and guilty for wanting time away from them.

I am extremely blessed in my life, and I know there are people far worse off than me. I just needed to vent. Any ideas people have on free or inexpensive ways to take a break or help me re-fuel would be more than welcomed! I have a lot of hope that the warm and sunny weather coming up will certainly help. Thanks for letting me vent :)

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!

         
    

182 Days

Today is Bryce's half birthday. It's been 182 days since the retirement of our old life. 182 days since the world as we knew it ended. 182 days since we took health and 'normalcy' for granted. We are so blessed that both of our boys are so healthy. With Connor, I took that health for granted. I was thankful, sure, but I guess I just assumed he would be healthy. With Bryce, I fully realize how blessed we are. Many babies born with Down syndrome are not so lucky. Many would have been through a heart surgery or two in those 182 days. Many would have had abdominal surgery by now. Why was our son spared those health issues?There is a certain amount of guilt that comes along with that. It is one of the things that holds me back from reaching out to other families of children with Downs. I don't even know what we'd talk about, because so far we have had it so easy.


        That being said, now that Bryce is six months old, there are areas where I'm starting to notice a delay. Around Christmastime, we really starting noticing that Bryce had a strong preference for looking to the right. It became really obvious the more we had him sitting upright. Because he started baby food, I thought I'd try the Bumbo seat to see how he'd do. He has always had head control issues, but his neck had been getting stronger. What I saw when I put him in that Bumbo was alarming. He was leaning so far to the right. His head, neck, shoulders, everything was being pulled down to the right. We decided we really needed to get him checked out by a physical therapist again. They pretty much diagnosed him with Torticollis over the phone. It basically just means that his muscles on the right side are tighter than those on the left, causing him to tense on that side. Although this is a fairly common with all babies, I'm sure Bryce's low muscle tone didn't help. Along with Torticollis often comes a flat spot on the head (from always going to one side). Bryce's flat spot is moderate, and we will talk to his doctor about it at his six month check up. They will probably do a 360 degree scan of his head, and if it's bad enough he'll need to wear a helmet for awhile. I'm hoping we can avoid that by getting this under control soon, but we'll see. He's now attending physical therapy one day a week, and there are a few excercises and changes we are doing at home.

       Because it's weighed down to the right, Bryce still struggles to hold his head up. I have noticed just in the past few days that he seems to be getting bored with doing the same old things all the time. It's as if other areas of his development are exceeding his physical capabilities and I feel so bad. I put him in a jumper seat the other day and he was so exctied to spin the dials/play with the toys, but he just slowly slumped over. It was heartbreaking. I hope this physical therapy works quickly so we can get that head steadier. He is so good at grabbing toys and putting them in his mouth. He rolls around, and also wants to start scooting on his tummy, but always face plants. Once he gets his neck strength built up, he'll probably be scooting around the house! I'm reminding myself to appreciate having a fairly immobile baby, 'cause life changes quickly once they start motoring around!

         The other big thing on our minds lately is school. It's preschool registration time, and Connor will be going in the fall. Even though he'll have two years of preschool first, I have been thinking a lot about kindergarten. I always assumed my kids would go to Catholic school, because that is my comfort zone. It's where I went to school and where I have always taught. Now I don't know what we'll do. I want to have an idea of where Bryce will be better off before we make a decision for Connor. Right now we don't have any way of knowing how high functioning he'll be and/or if Catholic schools will be equipped/willing to take him. Then there are the social things to consider...will he be better off in a smaller, Christian environment or one with a more diverse population (and possibly even other kids like him)? It's been weighing so heavily on mind even though there is no way (or reason) to make the decision right now.

    This turned into a pretty heavy post (I'm having a sad day today), but it really should be a celebration of this sweet baby's half birthday. We are so blessed to have such an easy, happy, healthy baby who has already taught us so much. In just 182 days I have gained so much knowledge and changed many things about my way of thinking. Even though there are still days that I wonder "why us?", and even though I know there will be many challenges to face, I don't think I would take Bryce's Down syndrome away. It's part of who he is--part of every cell in his sweet little body. There will be things he can't do because of it, but there will also be opportunities that open up for all of us because of it. He is a blessing just like his big brother. Here are a few recent pictures of our smiley, bright-eyed little guy.

 

 

 

 

 

                                                                     

 

 

Happy Half Birthdy, Brycey Boy! We love you!