Bryce at 12 weeks

Hi Friends,

   I can't believe it, but it was 12 weeks ago today that little Bryce blessed our lives. I already look back on that day and can't believe how sad I was. He is such a good baby and has already enriched our lives so much. I had no idea at the time how blessed I was the day he entered the world.

    In just the past week or two, he's really started to change and grow up. For a while, I was worried because he hadn't changed much since he was born--he just ate and slept all the time. Now, he's much more alert and getting so strong. He has been rolling from tummy to back since he was 4 weeks old, and can now lift himself up on his elbows too. He loves looking at bright colors and patterns--especially polka dots. He watches his brother and is still teasing us with little half smiles. He is so content and really only cries when he's hungry. He has even slept through the night twice in the past week. Compared to his refluxy brother, he is a really easy baby.

    One of the overwhelming things about Bryce's diagnosis was (and still is) all the physical and developmental problems that can come with Down syndrome. We still don't know what he will be capable of, but so far he is doing so great. Mike and I often wonder if we are just in denial, but he seems just like a normal baby--ahead of where Connor was at his age. We have been meeting with Early Intervention teachers from the school district and he was evaluated by a private physical and occupational therapists. I am so proud to say that at this time he doesn't qualify for either of those private services. We got confirmation that maybe we aren't in denial--he really IS doing well.

  
     Until the age of two, premature babies have two different ages--their chronological age (when they were actually born) and their adjusted age (how old they would be if they were born on time). When Bryce was evaluated by the physical therapist yesterday, she did some standardized testing with him. For his chronological age, he scored in the 25th percentile. For his adjusted age, he scored in the 75th percentile. She averaged them out to 50th percentile. That means he is doing as well as half of ALL 2 1/2 month old babies. To say I was proud would be an understatement. I know this doesn't mean he'll necessarily stay that way--but any time he can exceed expectations I will be so proud of him.

    One problem many kids with Down syndrome have is low muscle tone and/or floppy joints. Their ligaments tend to be a little longer and stretchier than other kids'. All the people who looked after him in the hospital said he had really great muscle tone for a baby with Downs. The physical therapist said the same thing--the only place she saw a problem was with his ankles. The ligaments are really loose--you can bend his foot back so far it almost touches his leg. She said that when he starts standing or walking it may become a problem, but one that is easily fixed. He just may have to have some soft ankle braces for a while or maybe an insert in his shoes. I hope and pray that he continues to do well and keeps exceeding those expectations!

    Connor has really accepted Bryce as part of the family now. He is much more comfortable touching him, sharing our laps with him, and talking with him. If he sees Bryce laying somewhere, he'll go up and talk to him in the sweetest voice. We went to visit my sister and brother-in-law in Omaha last weekend, and as we were packing up and getting ready to leave, my brother-in-law was holding Bryce. Connor went up to him and said, "Um, Uncle Brett, we need Bryce". So sweet! A few weeks ago he either wouldn't have noticed or would have wanted us to leave him there!

    We are so happy with our family of four. Bryce is such a sweet baby and a wonderful addition to the family. We're getting our family pictures taken later today and I have to go get myself ready while the boys are sleeping. Take care everyone!

Proud Mama

           I've said many times throughout Connor's life that I just want to freeze him at a certain age...starting at about six months. It's true that there are fun things about every age, but I really mean it this time. I want to freeze him just as he is RIGHT NOW.

            My first baby will be three next month. I can't believe it. I've been really weepy and sad thinking about it the past week or so. Yes, he has his two-going-on-three-I-think-I'm-more-independent-than-I-really-am moments, but he is so fun right now. I am so afraid I'm going to forget what he's like at this moment. I know I'll remember general things about him as a toddler, but every day he does something clever or cute or funny and I'm so afraid I'll forget. One of the reasons I want to blog is so that I can record some of these things. This post is really more for me--so if you don't want to experience an obnoxious, bragging mommy, you can stop reading right now.

Some of the things I love about Connor:

           His SWEETNESS. He is the sweetest little boy. He gets it from his daddy. Ever since he became mobile, he will often stop in the middle of playing just to come over and give me a hug. He will spontaneously say things like "I love you mommy", "You're my sweetheart", "You're my best friend", "I miss my daddy", etc. He has lately been coming up to our bed when he wakes up and he will put his arm around my waist or shoulders, just like he sees Mike do--it is so cute. The other day at Cub, I saw a kid who was about 14 sling his arm around his mom's shoulder while they looked at the Redbox. I so hope Connor will still be like that at that age.


           His INDEPENDENCE. He has always been so good at entertaining himself. When he was about 15 months old, he fell in love with all things transportation--cars, buses, trains--and could sit on the floor literally for hours and drive them around. He would lay his head on the ground and watch the wheels move. He would line them up, create a parking lot, etc. All by himself. No need for attention . Now he continues to love cars and trains, but always has a storyline going while he plays with them. He also loves doing jigsaw puzzles by himself. He'll sometimes ask me to do them with him, but doesn't really want me to put any of the pieces together. He just wants my company while he does it all by himself. Let me tell you, I have never appreciated his ability to entertain himself as much as I have in the last few months, with my bedrest and having a new baby around. How many women could have kept their 2 year old home while on bedrest?? I knew I could occassionally because he doesn't demand that much of me.

         His VOCABULARY. Connor has always been on the later end of normal for reaching his milestones--certainly nothing to worry about, especially considering his prematurity, but I like to worry about things. The thing I was most worried about was his speech. The child made me wait 18 months to hear "mama"! Now, I sometimes remember those days fondly--because now he NEVER stops talking! It wasn't really until this past spring that Connor started taking off in the speech department. Ever since then, he has amazed us with his vocabulary. He not only uses a large number of words and phrases, but always uses them in context as well. The other day he was playing with this trains and made some of them fall off the coffee table. I was half listening to his narration of the events and I thought I heard him say that they fell into the canyon. I asked him if he said "canyon" and he said "No, they fell into the GRAND Canyon". Grand Canyon?? What does a two year know about the Grand Canyon? We were looking at construction vehicles on the road the other day, and I said "Oh, look at that digger" and he said, "No, mommy that's a front wheel loader." What?

           His ENTHUSIASM. Even though Connor has so much and so many people who love him, I am so proud to say that he is not spoiled. He is still thankful and enthusiastic about every little gift and treat he gets. I have known kids in the past that have so much/get to do so much that nothing is exciting anymore. I don't want my kids to get like that. I want even McDonald's to be a treat, not a weekly occurance. Everytime we take Connor somewhere special (the zoo, apple orchard, a different park), he will say things like "I had a special day", or "I had really so much fun!". And he'll talk about it and remember it for weeks. Give the kid an ice cream sandwich and he squeals with excitement! It's that enthusiasm for the most simple things that I don't want him to lose. I don't want him to grow up!

         His INTELLIGENCE. I am very proud of the fact that Connor knows so much. He has just always had an interest in letters and numbers. He recognized every letter in the alphabet and numbers 1-9 by the time he was 18 months. He now also knows the sounds that most of the letters make and can count to 13. He knows about 10 colors and many shapes. I could brag for days about how smart he is, but I am most proud that he has common sense. He doesn't do stupid things like shove stuff up his nose or chew on things. He has always been cautious, not putting himself into dangerous situations very often. He amazes me every day.

         His IMAGINATION. He has lately decided that every member of the family is a Lion King character. (Connor is Simba, Mike is Mufasa, I am Timone (for some reason), Bryce is Zazu, and Bauer is Pumba). At first it was just a cute thing between Simba and Mufasa, but it has been escalating and continuing on for a couple weeks now. I haven't been called "mama" for at least a week (unless he slips--but then he quickly corrects himself). In the elevator at the Children's Museum the other day, a woman asked him if he was excited. He responded "Yes, yes I am! My name is Simba". Last night when it was time for bed he said "Timone, you put Zazu to bed so Mufasa can come lay by me." He says it like it's just completely normal--like those are our real names. We get a little worried sometimes, but I know he won't be calling us that when he's 16 years old :) 


         I want to just bottle this up. I wish we could have a hidden camera to record him so I can always remember. When he was six months old, I wanted to freeze him and now I'm so glad I couldn't because I would have missed so much. I'm sure a few months from now, I'll be glad again, but I can't imagine much topping how he is at this moment. I am so thankful that he is healthy and will grow up, but I'm just really sentimental right now with his birthday coming up.

      Take care! xoxo, Julie

5 Years!

Tomorrow is our fifth wedding anniversary. Our big day was perfect. The two days leading up the wedding were rainy, and the morning after the wedding we woke up to sleet--but the wedding day was PERFECT--mid-70s and sunny. I really think God sent that weather to show his approval :) I couldn't ask for anything more. Our families and friends were all in the same place, everything ran smoothly, and I got to marry this handsome man.

 A man who....

...makes me feel beautiful every day...

....does what's best for his family...

....calms me down when I'm anxious or being unreasonable (a full time job in itself)....

.....spoils me any chance he gets...

....who, just the other day, after being up all night with a diaper blow out and two kids who wouldn't sleep while I slept blissfully unaware in the next room, said " I really love being a dad"...

.....and who is a serious contender for the "best dad in the world" award.

 I am so lucky. It's been a crazy, busy five years. It seems like yesterday and a lifetime ago all at the same time. I'm so happy I'm on this adventure with such a great man. Love you, Mikey!

So Thankful!!

Last Saturday, our little family received the greatest outpouring of love and support, and for that I am so thankful. Shortly after Bryce was born, my sister-in-law asked Mike if it would be okay to hold a beer bust in Bryce's name. I think the original plan was to donate the money to a Down syndrome organization. It suddenly turned into a benefit to help us out with our medical bills (having a baby in the hospital for 24 days is not cheap--even with good insurance!). Before I knew it, it was a big affair with a silent auction, raffles, all you can drink beer, a bags tournament, a band....I couldn't believe it! Actually, I felt really guilty because there are families whose children are actually sick who I felt deserve it more than us. It is really hard to accept help like that, but I had to surrender to the fact that people just really want to help us out. It's just so humbling.

One of the things I was most looking forward to was seeing who was going to show up. Thanks to facebook, we had some idea of who was coming, but I knew that word was spreading in other ways too. I was so surprised by the number of strangers (friends of friends, co-workers of family, etc.) that showed up. I also saw some people I haven't seen in YEARS, loyal friends, co-workers and family members. There were even a few members of the Down syndrome community there. A woman from Special Olympics had seen the flyer with Bryce's picture on it and decided she had to come. She brought a friend and invited a few other people. Both she and another gentlemen each had children with Down syndrome who have unfortunately passed away. It again made me feel so fortunate that Bryce has a good heart and is so far very healthy. They both just sung praises about their children and gave us so much hope. A young woman with Down syndrome and her mother also came to "welcome us to the club".  It was touching and made us feel so welcome.

The first thing that struck me was the sheer number of silent auction items that were donated. I walked those two long tables twice and still don't know if I saw all the items. Thank you so much to everyone who donated and bid on those items. There are so many great people out there.

I have been reading a lot of stories written by parents of children with Down syndrome. It is shocking to me that even 10 years ago (maybe it's still happening, I don't know), doctors, nurses, family members, etc. would just assume you would abort or abandon babies with Down syndrome. We have received nothing but absolute love and support from everyone--I can't believe how far society has come in accepting people who are 'different'. It gives me hope that Bryce won't experience as much hurt and discrimination as I sometimes fear he will. Maybe by the time he's old enough to work there will be very few doors closed to him.He is certainly very loved...our biggest problem will probably be making sure he isn't spoiled rotten.

I need to give the biggest thanks of all to my in-laws for all the hard work they put into the benefit. Mike's whole extended family was responsible for putting it all together, and some of my family members donated and helped at the event. Mike and I are the luckiest couple to have the families we have.

I was absolutely horrible about taking pictures (and I swore I was going to do so well!), but here are a few.

Okay, this was before the benefit, but it's just cute, so I put it up :)

Silent Auction

List of all the donors for the silent auction

Thanks to everyone for their love and support! Unbelievable!

xoxo, Julie

Adjustments

Hi Friends,

    We've been going through a lot of adjustments the past six weeks. Adjusting to having a newborn, adjusting to being a family of four, adjusting to losing my teaching income, adjusting to being a stay-at-home mom (for me), adjusting to sharing the spotlight (for Connor), adjusting to having a hormonal crazy wife (for Mikey :), and adjusting to having a son that is a little different than we anticipated.

    Tomorrow is Bryce's due date. My pregnancy was so horrible that I can't even imagine still being pregnant right now. I was thinking about the fact that had he not been born early, we would still be oblivious about his 'condition'. We would still be anticipating the birth of our "perfect" little boy. We would have no idea about the shock and sadness we were about to experience. Man, that sucked. I am so glad we are not there right now. I'm so glad we are six weeks beyond that. I am so glad we have already been through it and can say we're okay now. I can't even tell you how glad I am. I keep thinking back to that day in the delivery room and I would never want to be there again.

    Even though we have adjusted to the fact that Bryce has Down syndrome, at times I think I am in denial. Right now, Bryce is very much a "normal" newborn. He sleeps, eats, poops, and snuggles, just like any other baby. He is actually ahead of where his big brother was at this age. Considering he is still supposed to be in the womb, I think it's pretty impressive that he is starting to coo occasionally, is on the verge of smiling, lifts his head, and has even rolled over four times. I am so proud of how well he is doing, but at times I think it adds to my denial. It's hard to differentiate between denial and hope/determination. I don't want to lower my expectations for Bryce, but I need to be realistic at the same time. Most babies with Downs are barely crawling by the time they are a year old. Just because Bryce rolled over at three weeks doesn't mean he's some kind of exception to the rule, but the mama bear in me wants to think he is. The mama bear in me wants to say, "Oh yeah, look at what he can do! You can take your lower expectations and shove them!" Does that mean I'm in denial? I don't know. I'm probably setting myself up for disappointment, but I don't ever want Bryce to think he can't do something just because he has an extra chromosome. When we were still in the hospital, one of the NNPs told me that we could probably expect to be out of there before Bryce's due date, but not before he was 37 weeks (we were still 2 weeks away at that point). I got so upset because I felt like people were going to be telling him his whole life what he could and couldn't do. She didn't mean any harm--and she ended up being right, but it was part of my journey. It was the first time I had to face that idea of being realistic while still hoping for the best.

   It is natural for parents to want the absolute best for their kids. We don't ever want them to feel pain or disappointment. We want everyone in the world to see how wonderful they are. I think sometimes about all the hard times Bryce has ahead of him and I feel so guilty. What did he do to "deserve" this? I think about his frustration when he starts talking and we can't understand him. I think about how hard it will be to explain to him why his brother can get his drivers' license and he can't. I don't want him to have to go through those things. I just want him to have a charmed life.

   While I obviously haven't figured this all out, I can say that we are adjusting. There hasn't been a day in six weeks that I haven't thought about Down syndrome, but there have been plenty of days lately that I haven't cried about it (yay!). We'll get there. Thanks for the continued thoughts and prayers. Take care!

Julie

P.S. Many people have asked how Connor is adjusting. He is doing really well! He doesn't pay much attention to Bryce, but there isn't any resentment. He is such a good boy. He doesn't like it when Bryce cries ("It's okay, Brycey...don't cry", "It's going to be okay Brycey"), and we've even gotten him to give the baby hugs and kisses. He is the sweetest boy around!

Eyes

In those first painful 36 hours after Bryce was born and diagnosed with Downs, his eyes brought me a lot of pain. It is usually such a rare treat when your newborn has his eyes open, but with Bryce it was different.  If his eyes were closed, and I didn't look too carefully at his neck fold or short arms, I could try and forget the painful truth. But his eyes were a dead giveaway....he had Down syndrome.

Now that the pain has lessened, his eyes are one of my favorite things about him. Now, his two or three hours of wakefulness is my favorite part of the day. The irises of his eyes are so big, they almost look like puppy dog eyes--very little white around the edges. They are never still--he is always looking around, curious about this new world. There is something about those tell-tale, slanted eyes that just look happy. When I look at his eyes, he seems older than 4 weeks. They look like he could break out into a smile at any minute.

I know that those eyes will continue to be a dead giveaway. When people see him, they will know. I worry about that. I don't want people judging him, staring at him, teasing him. But, when I look at them, I see that they are bright and beautiful. I see that they aren't so different from the rest of the family--Mike and I both have almond shaped eyes too. They are beautiful--just look at them!

 

 I already wonder what is going on behind them, and hope with all my heart that he will have the ability to tell me someday.

The Bitter Part of Bittersweet

    July 31st was a bittersweet day. Honestly, it was about 5% sweet and 95% bitter. It was the day our son, Bryce, was born. I feel so horrible already for saying that. This post will be full of things I feel guilty about, but I'm a painfully honest person. I know there are people who read this blog who don't know me. If you are here to judge or criticize, please don't continue reading. As of a month ago, I probably would have been appalled to read some of the things I will write...but I hadn't walked in these shoes yet.

     As explained in my early post, Bryce's labor and delivery was a whirlwind. I was so ready to not be pregnant anymore. When he was born and they placed him on my chest, it was one of my happiest moments. The day your child is born is supposed to be that way. He was so nice and big for being a preemie, and he had that beautiful head full of dark hair. He was crying and healthy enough for them to let us hold him for a while and take some pictures before whisking him away to the nursery. During that time, I couldn't see him very well, because he was right under my chin. Everyone said he was beautiful, but I just remember noticing his dark hair and how little his hands were. I didn't think he looked anything like his brother. I just found out recently that Mike suspected something was wrong right away, and I feel bad that he never had those few moments of ignorant bliss that I had.

     After a few minutes, they took him to the nursery and Mike was able to go along. I started looking through the pictures we had just taken on my camera. In a couple of the pictures, I noticed that it kind of looked like he had Down syndrome, but I shrugged it off, thinking that all newborns are kind of funny looking. It didn't seem to me like anyone had been concerned, and I had been monitored so closely....

     When Mike came back into the room a little while later, he asked me if I thought it looked like he had Downs. I again dismissed it, but could tell Mike (who had seen him a lot more than me) was worried.  Shortly thereafter, the NNP came in and told us that our son was healthy and beautiful (part of that sweet 5%)....and that she suspected he had Down syndrome (start the bitter 95%). My world stopped spinning. The whole high of  bringing a child into this world came crashing down. I couldn't tell you what was said after that, but in my memory, it seemed like she dropped a bomb and then went running from the room to save herself, leaving Mike and I to "grieve" the child we thought we were going to have.

     I also instantly and selfishly grieved the life I thought we would have. We had a "handicapped" child. He would live with us forever. There goes any dreams of having an empty nest and enjoying retirement. People will stare at us in public. Connor won't get to have a "normal" brother. Even though I now feel guilty for thinking these things instead of instantly loving my child unconditionally, they are legitimate fears and ones that may or may not actually happen. Our lives went from path A to path B without our knowledge or permission. How could we NOT grieve?

     Much of the rest of that day is a blur. I know I cried a lot, but I also know I pretended everything was okay a lot too. When I went to hold my son in the nursery, I didn't recognize him as my son. All I saw was the face of someone with Down syndrome. I am so ashamed to say it, but it wasn't really love at first sight like it's supposed to be. He scared me. He didn't look like Connor. He didn't look like me or like Mike. He looked like a kid with Down syndrome. But, I continued to go into the nursery, hug him, kiss him, show him off to his grandparents, and pretended to be so happy and proud.

He LOVES his baths!

    Luckily, the reason I can admit to those feelings now, is because they are no longer the case. I AM completely in love with him. I rarely even see the Down syndrome in him anymore. He DOES look like Mike. He has the same mouth and chin as Connor. He IS my son, and I AM proud of him. A lot of it was shock, a lot of it was fear of the unknown. In the two weeks since Bryce was born, I have come to accept the feelings  I had (and sometimes still have) as normal. I have read blogs and stories of other parents of children with Down syndrome and they very much echo my own story. The feelings of grief are healthy and normal. I wasn't grieving the life of my child, I was grieving the expectations I had for my child.

How could I NOT  be in love??

     Even though three weeks ago I was completely unaware of what my life was about to become, I already can't imagine it being any different. I can't imagine what life would be right now had Bryce been born without that extra 21st chromosome. Do I wish he would have been? Yes, of course I do. But that's who he is, and I love him--he is my son, the one I was meant to have.

    In the days since the grief and shock have lessened (not disappeared...), I have even become excited to raise Bryce and see what he can do. I have been able to see some positives in the situation. There is a large community of people we will meet. Not a club we wanted to join, but one we are a part of nonetheless. I believe Connor will be a better person--more loving, patient, and accepting of others. I know that he will be such a good brother. I remember in the horrible, dark moments after we found out, I kept thinking about how Connor will just see him as his brother--he won't know there is anything wrong with him. Eventually, yes, we will have to explain it to him somehow, but I was envious of the fact that Connor would just look at him and see the baby brother we'd been talking about, not the face of Down syndrome that I saw.


    I am so lucky to have a partner like I have. Things like this have to be exceptionally hard for men, but my man stepped up to the plate and accepted Bryce even before I did. He is so full of love, and me and these boys are blessed beyond belief to have him. The road ahead of us is bumpy, long, and will take many unexpected twists and turns. We don't know how 'severe' Bryce's Downs will be. We don't know what he will be capable of...but do we know that for any of our children when they are two weeks old? What we do know is that he appears to be healthy right NOW. We do know that we will do everything in our power for him to exceed expectations. We do know that he is a sweet, snuggly, adorable baby who needs us. When he gets home, our lives will be filled with appointments, assessments, meetings with OTs, PTs, speech therapists, doctors, etc. But it will also be filled with love.

So Blessed!