Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Wednesday, August 29, 2012

Wonderful news!

We had Lauren's cardiology appointment today. Today marks 5 months since her surgery. It hardly even seems real when I think about it. Luckily the memories of her hospitalization are fading into just memories instead of bringing me panic when I think about it.

Lauren is doing great! Her cardiologist said she's doing "teriffic"! Her weight gain is great, her heart sounds just like it should. She had a residual VSD (small hole between the lower two chambers of the heart) that is very tiny and won't require repair. We are able to stop Laurens' medications by the end of this week.

It feels like we've been given back our baby. Like she is really ours to keep. I know fellow heart moms will understand what that's like. It makes me cry to think about how incredibly blessed we are to have a healthy baby. Before Lauren I would have (and did!) take it completely for granted.

We don't go back until December 12th! And the cardiologist wants Lauren to get the Synagis shots this year as well- the vaccine to prevent RSV. She said if we have any issues with insurance not covering it to call her and she'll go to bat for Lauren and make sure she can get them. We see her pediatrician on September 10th and will talk about it more with her.

The sense of calm in my heart right now is unbelievable.

I'm to a point now where I LOVE her scar and I'm so proud of it. It's an outward symbol of the struggle we've been through as a family and how much we truly have to rejoice about. God is good.

Tuesday, August 28, 2012

Jumping in with both feet

We did it.

We signed Ryan up for preschool!!! He starts September 10th! He's only going one day a week from 12:30-2:30 so it will help ease him in. We went for a tour today and he LOVED it. He didn't want to leave and his teacher seems amazing.

It's a co-op preaschool, meaning we have to be pretty involved, but I think it will be good for us. I'll be the parent volunteer in the classroom once every 6 weeks and attend monthly parent meetings! I'm so excited!!

Ryan also gets to have a sleepover with his grandma and grandpa tonight, his Pa is going to take him on a long bike ride!

Tomorrow morning Lauren has her cardiology appointment at 9:30. I'm nervous. I think she'll have another echo and I'm terrified that they'll find leakage or say that say that she need additional surgery. I would be totally shocked because she just seems so healthy. But I'm still scared. Wish us luck, I'll update after!

Saturday, August 25, 2012

I'm obsessed with preschool

If I'm like this for preschool, how the heck will I survive college?!

We've been looking in to some more preschools for Ryan. There's one nearby that is actually on a petting farm and taking care of the animals is a part of the curriculum. Ryan would LOVE that. But it's also probably more expensive than our mortgage payment each month. I emailed the school to ask about prices.

There's one that's a little less expensive, but still rivals the cost of some car payments. The one thing I really like about this one is that it's partnered with a special needs program so that there are both typical kids and kids with special needs in the class. What a great concept! It's part of a local university and I love that our future teachers are being trained to expect inclusion.

I thought of something that made me sad though. I'm pretty sure that before we had Lauren I would have not chosen this school specifically because of the partnership with the special needs program. I probably would've not wanted Ryan to be in a class with kids with special needs. I would've thought he wouldn't benefit. What could he learn from them? How sad and closed minded.

Them. Like people with special needs are such a different class of people. I am so incredibly sad to admit that I think I felt that way a little bit. Sure, I knew of people with special needs. But they were the kind of people I would avoid eye contact with in order to ensure I didn't have to engage in conversation. How uncomfortable would it be if I couldn't understand the person? What would I ever talk to them about? Someday someone will feel that way about my daughter and that breaks my heart.

I want Ryan to be in an inclusive class. I emailed the petting farm school to ask if they have any kids with special needs enrolled. Why? Because he has so much to learn from everybody. All people do things differently. Kids with special needs adapt and learn new and inventive ways to accomplish things that might be easy for somebody else. How amazing would it be for Ryan to learn those kinds of things? I want him to see that people that are different from him are equals and opportunities to develop great friendship- whether different in physical ability, cognitive ability, skin color or personality.

I'm excited to be looking at preschools for Ryan and I hope that we find an amazing preschool. But I'm realizing it has to be a school where Lauren would be welcomed with open arms when the time comes, or I just won't be comfortable sending Ryan.

Thursday, August 23, 2012

I might have a preschooler soon

Yikes! Did you see that title?!

Greg and I both think Ryan would really benefit from a preschool program. Both in learning and social interaction. But he was blessed with a December 18th birthday. The cut-off is December 1st! So finding preschools that have a young 3's program is tough. Finding ones that also don't require potty training is even harder. We're hoping to have him potty trained to start in January.

I found the BEST preschool. It is seriously perfect. It's a Christian preschool, which is important to us. It just seems like everything we would want in a preschool for our son. But they require the kids to be potty trained. I think he can start in January if he's potty trained and they offered to give us a tour any time! Even Greg wants to do the tour and he's not really a tour type of guy. If they don't have a January spot for him then I'm pretty sure that if we like the tour, that's where he'll go next fall.

I can't believe my itty, bitty, baby Buddy is growing up. He's not even a toddler anymore, he's a kid! When did that happen?!

Saturday, August 18, 2012

Lauren's first modeling gig!

Today Lauren and I had an awesome experience!

Two of my best friends, Sarah and Jayme, have their own business making headbands, hair bows, hats and bow ties for little boys and girls. They were doing a photo shoot today to promote their fall line and invited all of their friends and their kids to join in on the fun! Any bows and headbands you see Lauren wearing in any of my pictures are from them!

We had SO much fun and the weather was beautiful! Lauren loved being a model :) Sadly, Ryan didn't get to come because he's sick :( So he got extra snuggles with Daddy this morning instead!

When we first found out we were having a girl I was 15 weeks pregnant. We didn't yet know that Lauren would be chromosomally enhanced! Sarah and Jayme were so excited to ge a little model! After we found out that Lauren would be born with Down syndrome they were still obviously excited to be getting a new little model. But I had doubts.

One of my fears when we found out that Lauren would have Down syndrome was that she wouldn't be pretty. And that others wouldn't value her the way they would if she'd had 46 chromosomes instead of 47. I was afraid that my friends would have Lauren still model them either to make me feel better or to humor me. I can't believe I doubted my friends! I have amazing friends. We get together on Wednesdays for a Bible study and Jayme and I are in MOPS together at church.

 It's really wonderful for me to be able to look back on those fears I had and realize that Lauren is so much more alike than different.

Here's a sneak peek of a picture Sarah took on her iPhone!


And another one of me with my girl!



It was really great to go have a good time in the sunshine and fresh air while spending time with great friends! And the Starbucks that has been closed for remodeling was open, which made the day even better.

Check out Sarah and Jayme's website at www.sajababy.com I'm not sure when their new fall items will be on their website but I know that you'll want to check it out!

Monday, August 13, 2012

Rambling about the future

Lately I find myself consumed with an internal argument about whether or not we should have any more kids. For the most part I feel "done". But then I remember that my youngest is barely 6 months old and I certainly don't need to make any decisions yet. The lucky thing for me is that Greg is 100% supportive with whatever I want to do. Seriously, the man is a saint. (Don't tell him I said that.)

I told Greg that I wish we could adopt the kids a sibling as an adult. Isn't that terrible of me? I don't look forward to any more newborn stages. In fact, I can't wait until we can be diaper bag free! We were just getting there with Ryan when we had Lauren. We got a small taste of freedom, haha!

Part of me feels like maybe I want another one for the wrong reasons. I want the kids to have another sibling to share the burdens of life with. I want to add another person in the mix to worry about their parents as we age. I want Ryan to have a typical sibling to lean on if ever Lauren needs help and Greg and I are gone. I want Lauren to have another typical sibling that might be willing to share responsiblity to help her succeed in life. I want a full, loud and loving house. I want more chances to have grandbabies.  And this is all assuming that another baby would even be typical. When Lauren becomes a big girl instead of a baby I know my arms will ache for another baby.

I don't at all regret that Lauren has Down syndrome. It's something I can honestly say that I celebrate about her. She wouldn't be my Lauren without that extra cuteness chromosome. But I worry so much about her future. What happens when Greg and I are 83 and 80 and Lauren is 55? Will she be able to live totally independently? Probably not.  I am so terrified of her ending up in a group home with someone caring for her that doesn't know what a miracle she is. Would having another sibling in the mix prevent that from happening? I have no idea. I hate worrying about the future, especially something a half a century away. And really, nothing is a guarantee anyways. I could get hit by a bus tomorrow. (I don't want that to happen!)

While I certainly don't have baby fever right now I could certainly get it in a few years. What if I'm 40 and regret not having a third child and then it's too late? Will I mourn the child I never chose to have? The thought of having another child with a serious illness like congenital heart disease makes my whole body go numb with fear. Can I take that gamble?

If we don't have another child then there will be more money to go around for the two we do have. And while money isn't everything it certainly makes some parts of life easier. We'd love to pay for college for both kids. I would love to be able to afford to provide them with school trips and sports and pets and family vacations. Lauren's earning potential is probably not as high as Ryan's. We want to be able to supplement the rest to make sure she is always comfortable financially. We want to be able to pay for Lauren to have an apartment with a few girlfriends one day...or a husband. Lauren most likely won't have children and just because she has Down syndrome doesn't mean she won't feel like she's missing out. I'd like for her to have a dog or a cat or freakin' pony if she wants one. See the crazy things that go through the mind of a special needs parent? (Please, tell me I'm not the only one!)

But none of that compares to the love of a sibling. I have two sisters who mean the world to me. I honestly cannot imagine my life without either one of them. What if Ryan and Lauren get older and feel like someone is missing?

I know I probably sound like a lunatic. I don't care, I just need to get this out of my head and 'on paper'. We wouldn't even consider another baby until Lauren is around three so it's not like I have any pressing decisions that need to be made. I'm only 26!

I feel like so much of this post centers around what Lauren probably won't do and I hate that. But sometimes realism sneaks up on my optimism and I don't know how to reconcile the two. Any special needs parents care to weigh in on this? Even if it's just to tell me that I'm not crazy. You can lie.


And because her smiling little face reminds me that I need to calm down and enjoy every moment:
And his face reminds me that the bonds of sibling love are stronger than almost anything:

Friday, August 10, 2012

Buddy Walk 2012 is coming up!!

I am so excited to be doing the Buddy Walk this year!!! Our team name is Lauren's Hope.

Check it out here:
http://www.downsyndromesupportteam.com/index.php?option=com_content&view=article&id=21&Itemid=45

And here is our fundraising page:

http://www.firstgiving.com/fundraiser/LaurenHope/2012BuddyWalk

A lot of our friends have already expressed interest in walking with us! I hope we have a big team and have a great time!

If you are local, please walk with us! It's $40 per family (2 adults and their children) or $20 for an individual adult. If you are not local- just fly out here to walk with us ;)

Thursday, August 9, 2012

Give Peas a Chance!

Tonight as I was rocking Lauren to sleep I found myself fighting back tears.

As I rocked her I kissed her sweet little cheek and smelled her sweet baby smell. And you know what? She doesn't just smell like a baby anymore. She smelled like the pureed peas she ate for dinner and baby sweat from her helmet. Why does that make me cry?

There were days I worried that we wouldn't get here. That I wouldn't get these moments with Lauren.

My baby girl will be 6 months old on Sunday. She eats baby food and plays with toys and gives open mouth kisses. She gets her arms and legs stuck in her crib slats because she moves around in her sleep, she giggles when we kiss her tummy, she loves her Taggie blanket and has an actual soft doll that she hugs when she's tired. She's already been to the zoo four times.

I'm actually getting the chance to watch my newborn who was once so sick grow into a strong, healthy baby. By the grace of God I'll get to watch her grow into a beautiful little girl and a smart young woman. Words can't even explain how grateful I am for this opportunity. At the same time it's going too fast! Didn't I just have her a few weeks ago?

This evening was amazing. My mom and I took Ryan and Lauren out to dinner. Ryan was so sweet and was a pleasure to eat dinner with. He's 2. That doesn't happen all that often! Then we snuggled before bed and ate carrots and celery for a snack. We waited up late for Daddy to get home. Ryan went to bed giggling which means this day can be called a success by any stretch of the imagination!

I just feel so... content. I'm working the next two nights so chaos will soon take over my happy little home. But tonight I feel wonderful.

Going to the zoo is hard work!

Tuesday, August 7, 2012

Milestones

Lauren had her PT and OT evaluations at the University of Michigan Milestones clinic today! Everyone was super nice and Lauren LOVED the therapists.

One of them even asked, "Does she just really like me or is she always like this?"

I promised that while I was sure that Lauren really did like her, she is always like that! I love that Lauren is so friendly. Sometimes she'll stare at people and not really know what to think but as soon as someone is willing to pick her up and play with her she is Miss Congeniality.

Lauren ended up not qualifying for services through the clinic because she is currently at age appropriate level for both fine and gross motor skills! Go Lauren! She's at the 50th percentile for development. They warned that it might slow down a bit as she gets used to her helmet though.

They showed me some different ways to play with her to encourage her to reach for things while sitting supported and on her tummy, how to help her learn to sit up and how to work with her upper body to get her ready to eventually crawl. They said she is doing great!

I wish I could take credit for any of it. But the truth is that Lauren happens to love playing on her tummy which is the #1 thing recommended to help build core strength and upper body strength. Ryan hated tummy time. Lauren loves it!

Sometimes I wonder what will happen when Lauren hits somewhat of a developmental "plateau". She eventually will, whether it be intellectual, physical or both. Will I care? Will I be sad? I might be, just because especially as new parents it's ingrained into us to look at milestone charts to see where our kids are "supposed" to be. It can be challanging to step back and let our kids set their own learning curve, Down syndrome or not. Example: My sisters are both great at sports and we all played softball. Me? I got stuck in right field and everybody prayed I never had to catch anything. I think it's important to encourage our kids to step outside of the comfort zone (hello softball, soccer and track! I drew a line in the sand when it came to basketball. I'm 5' 2!) but it's also a pretty good idea to let a kid decide for themselves which talents they want to foster.

I hope I can remember to take a step back and realize that it isn't about me or what I want for Lauren. It's about Lauren and what she can accomplish (which is a lot!) and what her goals are. I want her to be a ballerina. But maybe she'll want to play soccer! What if I push her to be awesome at math and she just really wants to be a writer, or play the piano, or loves history? What if I want her to be an athlete in the Special Olympics and she's more than content just to watch?

 I think that for all parents we tread a fine line between encouragement and pushing just a little too hard. I hope that for Lauren I don't allow Down syndrome to stop me from stepping up to that line. And I hope that my ideas about her future don't allow me to step too far over it. I think maybe all parents worry about this, I know I do with Ryan.

Parenting isn't supposed to be easy. If it was we'd all end up with lazy kids who expect everything to be handed to them. Sometimes it happens even with stellar parenting! Sometimes I worry if I can do a good enough job with my two awesome kids and if I'm capable of leading them into being two awesome adults. Good thing we have help, I really do think it takes a village to raise a child. Lucky for us our village is pretty dang sweet!

Monday, August 6, 2012

Lauren's new helmet!

Lauren got her helmet today! I was kind of sad going in to the appointment because I didn't want her to need a helmet. But she looks ADORABLE!!! (As if there was any doubt)

We were running late and ended up being about 20 minutes late, which I hate. And the doctor had a snarky comment, "What, is it too early in the morning for you or something?"

Yeah, our appointment was at 11. LOL! As a nurse I already have some opinions on doctors in general and he did not disappoint. Lauren, however, decided to be a traitor and seriously would not stop smiling at this guy!

We went out for lunch afterwards and met my mom and Ryan (she was watching him during Lauren's appointment), my sister and my baby nephew! Ryan was hilarious as usual and was making friends with other diners. He wanted to know what everybody else was eating!

People were openly staring at Lauren. It kind of bugged me. If you remember, Ryan had a helmet as well and I hated the staring then too. I feel like the helmet kind of screams, "Hey! I'm different!". It was bugging me because people weren't even really smiling, just staring. I fear this happening when she's older simply because she has Down syndrome and her noticing and it bothering her. But then a message board friend pointed out that they could just be staring because she's really cute! And you know what? She IS really cute, so maybe that's it!

Until this one elderly man who was probably 80 or so asked me to bring Lauren over to him. He actually addressed her and told her she was beautiful and that he loved her helmet! It was so incredibly sweet. I wish everyone was like him!

Lauren can't hate her helmet too much, she laughed for the first time today!!! It was such a wonderful sound!! I am so blessed with two of the happiest kids I've ever met :)

Oh, I almost forgot about the most important part of our day. Lauren laughed for the first time!!! I was kissing her belly and talking baby nonsense to her and she laughed!! It was such a beautiful sound!

Side note: If you're just stumbling upon this post, let me explain the helmet. It's a plagiocephaly helmet aka a helmet for reshaping the head. Both kids had/have flat spots from positioning. It's a lot more common now that babies sleep on their backs. Lauren's head isn't flat so much as it's misshapen. It's a combination of positioning and other things. She was in the hospital for 5 weeks during which she was very sick and lethargic and had open heart surgery. She didn't really move around too much and we couldn't hold her 24/7. She lacked the neck/head strength and control to move her head around herself and when we would move it for her she would just move it back to how she wanted it. Since she will be delayed in sitting independently her head would've just continued to get flatter had we not chosen the helmet. So that's why she has it! It's not really a "Down syndrome thing" but I think it's just a smidge more common in kids who rock the extra chromosome.

Friday, August 3, 2012

Christmas is in the air!

I know, I know, it's only August. But if you know me, you know I LOVE Christmas! I would celebrate year round if it were socially acceptable. The feeling I get in my heart and soul right around the end of November is unexplainable. Its the feeling of a cozy sweater, a crackling fire, hot cocoa, family, the first snowfall, cold noses and warm hugs, cinnamon and Christmas carols all rolled into one nameless emotion. I absolutely love it!
Last year at Christmas time my heart was utterly consumed with worry and fear because we had so many unknowns. Would our baby make to delivery? Would we love her the same as we would a typical baby? Should I even get attached in case she doesn't make it through surgery? What if she doesn't even make it to surgery? Why was God doing this to us?

Needless to say, this year we have a LOT to be thankful for and I am so super excited to celebrate my favorite time of the year with our happy family of four. What better time than Christmas to celebrate the miracles living under our very own roof?

When I look at Lauren I can't even believe I ever doubted that she was something to be thankful for. That I let worry steal the joy that was trying to fill my heart.

I can't WAIT to celebrate the heck out of Christmas this year! I am pretty much obsessed with the Holiday board on Pinterest!


Do you think it's too early to get her a pony??