Welcome to my blog!

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

Thursday, May 31, 2012

What is acceptance?

Remember that post I wrote awhile back about the road to acceptance? I've been kind of revisiting that lately.

Honestly, I think about Down syndrome every day. I think about it when I see other babies doing things Lauren hasn't quite conquered yet. I look for it in her features. And, believe it or not, I get SO excited when people ask me if she has it! I feel like we're now part of an elite club that requires an invitation. Some people decline that invitation, which a gross undertatement. We, and a lot of other super awesome people we've come to know, accepted it.

At this point, Lauren's delays are not really all that apparent. I mean, she's three months old! Three month olds don't exactly do a whole lot. (Or do they? I think Lauren's pretty on target for how her older brother was developmentally at this point). But she doesn't roll over (at least not on purpose, she's done it once by accident). But I am trying really hard not to be in denial. Lauren will have delays. But I try not to think about it. I don't look at milestone charts to see where she is. Why would I? I'll be sad. Every parent envisions a future full of accomplishments for their children. And Lauren will have a future full of accomplishments. Just maybe not at the same time as her typical peers and her accomplishments might be different.

Right now that doesn't really matter a whole lot. She's just a baby! And as my husband says, all babies do annoying things, haha. Lauren just does them with extra cuteness. But when she gets old enough to notice? It's probably going to suck. But I don't live my life in the future. I live right now. Right now I am so thrilled that she is smiling a ton! And "talking" to us a lot. And engaging us with her eyes. Right now I am just enjoying my amazing little girl.

Lauren just celebrated her 2 month post-op anniversary. It seems like a lifetime ago and a day ago all at the same time! I don't know if that makes sense. Sometimes I still can't believe how incredibly sick she was. Because she looks so incredibly healthy now. I am thankful for her every single day. Every time I change her clothes I love to kiss her scar and think about what it represents to me. It represents the challenges Lauren faced in the first two months of her life and how she overcame them with a flourish. But it scares me too.

I recently started my new job (yay!) We're learning about how the #1 cause of unnecessary hospital deaths are directly related to sepsis. Which Lauren battled with a vengence. And medical errors, which resulted in the sepsis not being caught right away. We learned about the Josie King Story. (Google it, but grab a kleenex box first.) And I feel so so lucky to have my little girl.

Right now, I am feeling so good about what Lauren is doing and who she is as a little person. But will I eventually be a little sad? Depressed? Disappointed, even? Yes. It might be tomorrow, next year, or 20 years from now. But you know what? I have a beautiful little girl that I get to raise, love and help grow. I am so thankful that she is alive. Does it take away any of the other feelings that surround a diagnosis like Down syndrome? Nope. But how lucky that I get to feel these emotions? There were days during our stay when Lauren seemed so weak, so small and so sick. I was so afraid to ask how she was doing because I wasn't ready for the answer. It's scary to think back on and I'm so afraid of how things could've turned out. So right now? Down syndrome is a gift. Doctors told us that kids with Down syndrome tend to recover more quickly and do better with the surgery that Lauren had.


The point is, I don't think that "acceptance" of Lauren's diagnosis of Down syndrome is a destination. For me, it's a more of a road trip. A road with lots of windy, twisty paths with some definite bumps along the way. But when we get to the smooth parts of the road the grass is beautifully green, the air is fresh and the sun is shining. And I forget all about the bumps in the road a while back.

Wednesday, May 23, 2012

New skills and life updates

Lauren has been doing so many new things!!

Just recently she's started consistently making eye contact and smiling these huge, open mouth, eye crinkling smiles. It's amazing! I love it so so much, I forgot how great baby smiles are. It's like whoever she smiles at is the only person in her whole world at that moment. Even Ryan loves it, he got a huge smile the other day and said, "Mommy, she 'miled at me!" (He doesn't say the s sound so well, hah)

Another great thing? She coos now! She has the cutest little voice and she's been "talking" more and more. It makes me feel like she's so happy!

I am so happy that she's doing so well. I don't honestly know if she's meeting the 3 month developmental milestones, I haven't looked them up! She is, however, doing things on her own time and that's fine by me. She will hopefully (fingers crossed) be starting early intervention therapy very soon. We got the runaround about which school district would be providing services, and then found out that they don't do a full schedule of evaluations and therapies over the summer. They do monthly evaluation clinics for the summer so I'm going to call tomorrow and hope I can get her in for June's clinic. It's not really acceptable to wait until the fall, she'll be 7 months by then and we want to start asap. I think it might get tricky because we live in one city but are in a different city's school district. I have left so many voicemails and emails in the past week and was shocked to actually get a call back today!

I think we'll be doing some private therapies as well through an amazing special needs clinic nearby. We actually went to a donor benefit last fall when we were pregnant with Lauren and were SUPER impressed. Greg's grandparents donated a pretty big chunk of change and as a result, we got to go to the benefit. I've been emailing with the doctor who runs the clinic and I'll let her know my schedule for the next few weeks and she's going to find time to meet with us. We met her at the benefit and she is awesome!

In other news, I GOT A JOB!!! I am officially a working RN. I'm so excited! It's with the hospital system where I did most of my clinical rotations in school. I really never wanted to work anywhere else, so I am so excited for this opportunity! I started on Monday. Life is c-r-a-z-y now, but I love it. I love getting out of the house, meeting new people, earning money and pretty much everything else about it and I'm still in orientation! Kudos to all of the stay at home moms, it's a really hard job that doesn't pay very well at all and it's also not for me.

Life is awesome and totally nuts lately. And Greg and I are taking a kids-free weekend trip to Chicago soon! We haven't had time like that to ourselves since we were pregnant with Ryan so we are so excited! When we found out that Lauren had Down syndrome I was envisioning a life of never spending time with my husband or doing this as a couple. Yeah, so not true! I am going to miss the kids so incredibly much (I miss them so much while I'm at work, more than I thought I would) but I miss the one-on-one time with my hubby too. I am loving our new normalcy.

Friday, May 18, 2012

Holy cuteness!!

Lauren tried out her Bumbo seat for the first time today! I've been surprised at how strong her neck is and that she can hold her head steady for so long so I figured we'd give it a try. She loved it!! She was smiling and looking around! She looks so tiny in there and her feet barely make it out of the seat.

As soon as I took her out of it Ryan jumped in and said, "I fit!" Haha!

Thursday, May 17, 2012

Bittersweet

I just got done packing away Lauren's newborn sized clothes. I'm sad. I know I should be happy that she's growing and getting bigger, and I am, for the most part. But I'm mad. And pissed. And I feel cheated. I feel cheated out of the newborn stage of Lauren's life. We spent five weeks in the hospital instead of at home. Attached to tubes and wires instead of cuddling on the couch. The outfit I picked for Lauren to wear to church for the first time? She didn't get to wear it to church. All of those super cute outfits I picked for her? Kind of hard to wear when you have to be assessed for how blue your skin is. Kind of hard to wear when you have to get a new IV every four hours because your veins are so tiny and the medication is so strong. Kind of hard to wear when you have to have your whole body checked to find out where the infection started that made your blood go septic. Impossible to get your baby dressed when you can't pick her up. When the only area you can kiss is her foot because everywhere else is covered by gauze, IVs, a respirator, arterial lines and a pulse oximeter.

So yeah, today I'm sad. I'm sad that Lauren wasn't home to wear her clothes. I'm sad that I probably won't have another baby to wear them either. I'm sad that we can't get that time back. I am so incredibly thankful that she's alive, healthy and all mine. I'm thrilled that she's getting bigger and stronger every day. I feel so incredibly lucky that Lauren is mine. I try really hard to be positive 100% of the time. Most of the time I am beyond happy. But my emotions are all swirled around and mixed together and overlapping.

Honestly when I look back to Lauren's open heart surgery and accompanying hospital stay I feel like I'm looking at somebody else's life. Like it happened to somebody else's family. It's so surreal most of the time. But I feel like it hit me today how sick my baby was. How many major setbacks we had in the hospital. How close we might've been to not having her here with us today. When I hold her in my arms I look into her almond shaped eyes, I kiss her tiny nose, her sweet chubby cheeks and her rosebud lips. I trace her scar that is already just a thin silver line. And I thank God that she's mine. I thank God that I get to be sad about her clothes not fitting because she wears a bigger size. We are the lucky ones.

Sunday, May 13, 2012

The R Word

I hate the word "retarded". Honestly, it used to be part of my regular vocabulary. "That's retarded" or "You retard". How sad.

Now it makes me cringe every single time I hear it, especially when it comes from people who I know love and care about Lauren. It's no longer a medical term and it's almost always used in place of stupid, ridiculous, dumb, weird or (insert word that doesn't mean anything nice). My heart sinks every time I hear it.

I know that people don't mean it in reference to Lauren. But the sad truth is that someday somebody probably will. And that is not okay. It's a word that will never be tolerated in our home. Why should anyone use it? There are several words that would more accurately describe whatever situation is being referenced. It's hurtful. Every single time.

My hope is that Lauren would never hear that word. Ever. Normally I think sheltering your kids from everything doesn't do them any favors. Not this time. I think it would do Lauren huge favors. Why should she ever hear an ugly word like that? It's a word that people used to (and disgustingly still do) sum up an entire person in one word. How can one person, soul, heart and being be summed up in one word? Especially that word?

Did you know that in Nazi Germany, during the Holocaust, the first group of people that Hitler tried to exterminate were people with intellectual disabilites? Namely Down syndrome. Unspeakable things were done to people who weren't deemed "perfect". Horrible expirements were performed. It's vile to even think about, but it happened. To people just like Lauren.

The truth is, words hurt. The old adage about sticks and stones is not true. I hope I never have to explain to Lauren what the R word means. Or how the people it is referring to were treated accross the world. I hope Lauren only knows acceptance, love and belonging. And that is not possible unless the human race works together to evolve into a society that welcomes and embraces our difference. And assigns deep meaning and value to every person.

So whether you know us in person, or regularly read my blog, or happened to stumble upon it just this once please take this message to heart. Share it with friends. Help eliminate this word from our language.

Saturday, May 12, 2012

Happy Mother's Day!!

Happy Mother's Day!

I can't believe I've already been a mother for almost two and a half years! I am so incredibly greatful for my sweet little Ryan, the little boy who made me a mom :) I love him SO much. He is so incredibly sweet, gentle and kind. He love animals of all kinds, even bugs (ew!). He talks nonstop and narrates our entire day. He is always ready to give a hug, kiss or high five. He likes to stick out his pointer finger when we say, "ET phone home!" (I taught him that when he was only 6 months old!) He doesn't usually love snuggling but when he does it's the very best thing ever. I love him so so much it hurts sometimes and it is such a pleasure watching him learn new things every minute.

Lauren has been a part of our family for only three months, thought it seems like she's been a part of us forever. I love her more than words can express. She has been through more in her first three months than most people experience in a lifetime. She loves to snuggle and smash her face into my neck. She smiles with her eyes more than her lips. She likes to grab my hair with her fingers and try to eat it. She has made me not only a better mom but a stronger person. She has taught me that everything special in life is worth fighting for. She's taught me that being different is the best way to be. She taught me that thinking, feeling and loving from my heart is the very best way to love.

My mom is the best mom ever though, she has shown me how to be a great mom! I love her and and I am so happy to have her as my best friend.

My mother in law is a wonderful woman, I am so lucky to have her as my mother-in-love. She has raised an awesome man who I am so lucky to call my husband.

Happy Mother's Day to all of the moms and moms to be! It's one of the most important jobs on this planet and I consider it a true blessing to be called Mommy :)

Wednesday, May 9, 2012

Weight gain!

We took Lauren to the pediatrician today (she has a clogged tear duct) and she is growing so big!! She weighs 9lbs 3oz!!! I can't believe it!

Wait, yes I can. She eats nonstop! Every ounce gained feels like a huge victory :)

Saturday, May 5, 2012

Family size

Family size has seemed to come up a lot lately in a few different circles of friends!

For now, we feel 100% complete with our family of four. When I was younger I always envisioned three children. But now that we have two awesome kids, I really don't picture a phantom third child when I think of our family 5 or 10 years down the road. It's a pretty cool feeling to feel so complete!

Lauren's diagnosis of Down syndrome has had pretty much zero impact directly on our decision. I admit that since I've lost the "It can't happen to me" mentality I worry that a future pregnancy might be something I would have a very hard time with. What if future phantom baby had a fatal diagnosis? Or severe limitations? I do think this plays a small part in my choice to not have any more children, but honestly two kids just feels like enough for us. Babies are rewarding, but tough work!

Finances play a huge role for us as well. We want to be able to afford family vacations, couple's getaways, sports, dance, pets (okay, I'm the only one who wants a dog), retirement, college tuition (for both kids!), etc... Kids are pretty dang expensive. We are not rich and probably never will be. And that's okay with us! Money certainly isn't everything. I'm a RN and Greg is a bank teller. We are Greg is very good at managing our money and making sure we have enough for the things we feel are important for our family.

And yeah, Lauren might end up being a little more expensive in some areas. She might need hearing aids (although she's passed her hearing tests so far!) or glasses, or special orthotics to help her learn to walk. We want to be able to afford extra therapy for speech, extra tutoring for school. Health insurance often places a financial limit on these types of things. We'll need to pay the difference. We want to be able to pay for college for both Lauren and Ryan. If Lauren is able and chooses to live independently as an adult, we'd like to be able to contribute financially.

And I like to shop, which is expensive. I would hazard a guess that I'm our most expensive family member and probably always will be! Unless I passed the shopping gene to Lauren, maybe it will be a tie. As my twin sister says, I think I was born into the wrong economic class.

Who knows? Ryan might end up screwing around in college and costing us money on classes he doesn't pass or change his major 10 times...not that I ever did that or anything ;) Bottom line- kids are expensive. If we win the lottery that phantom third baby might become a reality. It might become a reality anyways, I am a woman and we are known to change our minds. But for now, I am totally content being the four muskateers.

And because this picture is too cute not to share:

Friday, May 4, 2012

Things I was afraid of

When I was pregnant with Lauren I worried about what she would look like, what she would accomplish, what she wouldn't be able to accomplish...you get the idea. The big downside to a prenatal diagnosis, in my opinion, is that you go through the grieving stage without a baby in your arms. This allows every worry, every thought and every idea of a person with "special needs" to morph into one big, scary person.

I was worried that she wouldn't be pretty. Aside from all the comments like "Down's kids are always so cute!" and "they are always so happy!" I worried what MY baby would look like. (Side note: Don't say this to a parent or, God forbid, a person with Down syndrome. Nobody is always happy, especially kids. And cuteness shouldn't be reduced to a side effect. Although sometimes I really do think that the 21st chromosome is responsible for cuteness, Lauren is extra cute)

Turns out, I was worried for nothing! She is so gorgeous. She takes my breath away with how beautiful she is. I mean, look at her:

I don't even think I'm biased, she really IS the cutest baby girl ever ;)

And my son?

Clearly Greg and I only make cute kids.

As for the accomplishments, we'll cross that bridge when we get to it. Right now Lauren has finally started smiling again since her surgery and I am loving every second of it!