Welcome to my blog!

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

Saturday, December 29, 2012

Life's little surprises

When we found out that Lauren would be born with Down syndrome I was sad that she wouldn't be smart.

Well, she is SO smart! At not even 11 months old she has two spoken words, Dada and Bubbles. She says Dada with purpose, obviously meaning Greg. Bubbles is what my kids call my twin sister and Lauren will repeat it when asked, if she feels like it.

I'm pretty sure she tried to sign mama today! Seriously!

Two spoken words and an almost sign and 10 months old.

And I thought she wouldn't be smart!

Her awareness and alertness has really taken off just in the past week or two. She seems so aware of her surroundings and seems to be constantly taking in information and learning. It's so wonderful to see!! It's like a switch went off or something and now shes constantly learning.

Friday, December 28, 2012

Christmas post

We had a wonderful Christmas, I hope you did as well!

 

 
And then we got all tired out:
 

 

Thursday, December 20, 2012

She did it!!!

We have been working on getting to a sitting position in early intervention for a while.

Today, I left Lauren to play in the living room while I went and got her clothes and chatting with Greg in the kitchen, wrote a shopping list (it wasn't that long, maybe 5 minutes) and then I happened to glance into the living room...

She was sitting up!!! She actually got herself into a sitting position! WITHOUT her hip helpers, which is shocking. As soon as she saw me she smiled and waved!

I am so excited!!!!

Tuesday, December 18, 2012

Prayers for Sandy Hook

Yesterday when I went to pick Ryan up from preschool, I was in tears. I hugged him and I cried. I couldn't help but think of the 20 families in Newtown, CT that didn't get to pick their children up from school. Having a child is truly like trusting your heart to walk around outside of your body. I can't even begin to imagine what they are going through. I am so incredibly sad for them.

We all sit  back after tragedies like that and say, "Something must be done." But what? And who? Nobody can agree what to do, it turns into politics and gun control and who's fault it was and placing blame on the government, the schools, the mother, autism, divorce...

The truth is that something must be done. And I don't think it's as easy as gun control. Or "putting God back into our schools" (which has been tossed all over Facebook). Personally, I think something major needs to happen for mental health. Mental health is the forgotten healthcare platform because you can't see it. It's a stigma nobody wants, nobody talks about and nobody wants to throw money at. With our current national debt and spending rising in unprecidented ways, can't just a fraction go to mental health? Please?

Read this woman's blog post. I am Adam Lanza's Mother

For now, all I can do is pray.

Saturday, December 15, 2012

I am overwhelmed

I am overwhelmed. Can I say that out loud?

I am overwhelmed with work, doctor's appointments, therapy appointments, crazy kids, co-op preschool, school for Greg, the house. Life.

Greg is working his butt off right now, he's working full time plus taking classes 3 nights a week. So he's pretty much never here during the week. So he's the one I take it out on, which is so not fair to him. I'm a jerk. We never see each other because I work at night and he's gone all day. I need a break. I cancelled two appointments this week and one for next week- and I don't feel guilty at all. (I rescheduled, I promise!) I want to just stay home with my kids and husband and not having any plans. I miss sleeping in the same bed as Greg, much less actually spending time with him!

I'm being horrible to him and do you know what I woke up to this afternoon? Flowers. Seriously. I love this man! He gets me.

I woke up today around 2. As soon as I opened our bedrooom door I heard Ryan from the living room. "Mommy!!!! You're awake!"

Lauren was giving me hugs and kisses and smiles.

Greg had flowers on the kitchen table for me.

How in the world would I make it without my family? They are my everything.

Lauren saw her cardiologist this week. She's doing great! One doctor said he heard murmers from the two residual holes (ASD and VSD) along with some moderate valve regurgitation. The other doctor, her main cardiologist, said she only still has the residual ASD that we knew about and that it's not posing any problems at all. We don't go back until July. She'll have another echo then (probably sedated which freaks me out)- the first since being discharged from the hospital in April. If everything looks okay we'll only need yearly appointments. Crazy!

It amazes me that Lauren is doing so many typical things. She repeated "bub" today twice when my sister was trying to get her to say "Bubbles" (my kids call her Aunt Bubbles or just Bubbles). She's trying to crawl. She took all of the wipes out of the package today and was trying to eat one when we caught her. Her whole head was wet from the wipes! She is waving at everyone now.

I've said it before and I'll say it again. I can't believe I was sad about her! I know it's part of the process and that it's totally normal. But nothing about her is sad, she is amazing! Greg took the kids to Costco while I slept today. A man came over to them and asked about Lauren and said she was really beautiful. Greg noticed a little later that his daughter also had Down syndrome! I love meeting other Ds families. I wish I'd have been there! I think we need a secret handshake to alert other Down syndrome families that we're part of the club!

See, she's already helping with the laundry!

Oh, hey! Just waiting to show the cardiologist how cute I am!

Tuesday, December 11, 2012

One of those days

Someone please, remind me why I decided to have children?

Yep! It's been one of those days. Ryan has told me repeatedly that he doesn't like me anymore and that he'd rather have Daddy at home.

Lauren, as an after-effect of her 3 shots and bloodwork yesterday, hasn't stopped crying pretty much all day.

Thankfully my mom is AMAZING. She came and got Ryan and took him to Coscto at precisely the same time that Lauren fell asleep! YES! So I'm drinking hot chocolate and mentally regrouping. Too bad it's not socially acceptable to drink vodka straight from the bottle in the middle of the day. (Kidding! I would never drink vodka. Tequila is way better.)

Is it bedtime yet?!

See how innocent they looked last summer?? Lies, I tell you! All lies!

Monday, December 10, 2012

9 month check-up

Today was Lauren's 9 month well visit, a little bit late. She'll be 10 months on Wednesday.

She's doing really well! The pediatrician said she's growing fantastically. I will never get tired of hearing that!

I asked about the crazy amounts of spitting up going on. She said we could stop fortifying her formula (it gives it more calories but can be hard on the stomach). We also got a prescription for Zantac in case it's reflux. She said if neither of those things work we can look into a milk intolerance. FINGERS CROSSED it's not that. It would mean switching to soy formula, which is constipating. Not five minute ago Lauren screamed bloody murder while pooping because I forgot to give her prune juice this morning. I'm hoping to avoid anything that might make her even more constipated.

I was worried because Lauren barely grew at all, weight wise, since her last appointment. She was 15.7lbs and now she's 15.9lbs. But she did grow an over an inch an a half! She's holding steady in the 40th to 50th percentile for both height and weight on the Down syndrome growth charts. There's some discord about using the DS charts or not but our health system chooses to use them. Lauren's head circumference is 16.2 inches. Tiny! Not even on the typical charts. Her doctors aren't concerned because it's always been small.

It's so wonderful to hear how great she's doing from the doctor. I LOVE it!!

And our pediatrician had some very encouraging words for us today. Her daughter is in high school and is on her school's gymnastics team. On a team they frequently have meets against there is a girl with Down syndrome. She's a junior in high school and she's pretty good! Our pediatrician said the girl is really flexible which probably helps her out and that gymnastics has probably been great for her strength! She said both teams always cheer for her and encourage her. High school girls can be pretty cool, huh? I'm so excited to hear of these kinds of stories!

Lauren's been pretty fussy since her appointment. She had 3 shots plus she had to get her blood drawn. Blood draws really stink for her because her veins are so little. Today was no different :(

Saturday, December 8, 2012

Who has the smartest kid ever?

This girl!

We FINALLY decided that Ryan needed to give up his pacifier, he will be 3 in a couple of weeks. He was only getting it at night and nap time. He chomped a hole in it and it wasn't safe. And he didn't want a new one.

So last night (while I was working) we decided to get rid of it. Greg showed him that there was a hole in it and they threw it away together. He slept his normal 10ish hours of sleep with no crying!! Nap time has been a bit of a challenge today but that's to be expected.

Go Ryan!!! And go Greg!!

Monday, December 3, 2012

Giving back

Today I had the opportunity to teach Lauren the importance of giving back.

Luckily I had a dollar in my wallet, I don't usually carry cash. We got to give a dollar to the bell ringer for Salvation Army while grocery shopping! Ryan was at home napping. Lauren was not super impressed with the whole concept, but she'll get there.

And our streak of weird happenings while grocery shopping continues. I thought we were past this since it happened every single time we went grocery shopping when Lauren was a tiny baby. Today was baby girl's first time sitting in the shopping cart! We got her a new Taggie shopping cart cover (for Christmas. I am horrible at waiting!) and she had on her new purple pea coat and was sitting up, waving at people and generally being amazing. This woman goes, "Is your baby 2 months or 3?"

Really?! What 2 or 3 month old baby do you know that is sitting up, waving a rattle and waving at other shoppers? She must've had some pretty smart kids! I get that she's little but really. We were just asked yesterday if she was about a year old, which is much closer to the correct answer. People are weird.



On a serious note: Please pray for my husband's family. His uncle passed away suddenly from a heart attack on Saturday while mountain biking with a friend. He was 52 and extremely healthy. He leaves behind an amazing wife and two beautiful teenage daughters, as well as several siblings and his parents. My father in law is heartbroken at losing his brother. Please, please, please pray for this family. They needs God's love and healing now more than ever.

Thursday, November 29, 2012

Little piggy!

Apparently girlfriend loves spaghetti! She's tried it before, but just a few bites. Since we're planning on having it for dinner tonight, I made the sauce this afternoon and boiled Lauren a small portion of noodles so she could have it for lunch. She went to town! She ate the whole bowl and was kind of sad when it was gone!

P.S. Don't you love how her hair looks so crazy?! This is what happens the day after pigtails. Needless to say, she got a bath promptly after lunch!

Wednesday, November 28, 2012

Amazed

Today I am just simply amazed at how much Lauren has grown and changed since her birth.

How on earth did she go from this:
and this:
to this:
in just 9 short months? How is that even possible? It's almost like her hospitalization and surgery and complications were in another lifetime. Did it even happen? It's so crazy to feel that way, but I do. Finally! I felt like it would always feel so incredibly fresh in my heart and in my mind. And I know that sometimes it still will. That part of our lives will always be there. But I am just amazed that she is a little girl now. She loves splashing in the bath tub, sitting up on her own, playing with books, eating snacks, petting Grandma's dog. She saw herself in the mirror yesterday and her whole face lit up as she waved at the baby in the mirror. She danced back and forth while on her hands and knees and danced her head right into her stand-up toy, then laughed.

I look at her face sometimes and wonder if she's even real. Is this actually happening? She is such a miracle that I still feel like I have to pinch myself to make sure I'm really awake.

The feeling of wholeness that our family has right now is just wonderful and we definitely do not take it for granted. The kids and I trekked to the grocery store this morning. We played with trains, made breakfast and watched Pound Puppies. Lauren fell asleep in her exersaucer while Ryan pretended to sleep on the couch. All such every day, normal things that feel so extraordinary to me. I can barely believe this is the same life I had 8 months ago when Lauren was so sick. I missed Ryan so much my heart ached. I was so sad for my baby that my soul ached. And I missed my husband like crazy. The fact that we all get to be together leaves me in awe.

I am amazed.

Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.

Guess who has a tooth?!

Lauren got her first tooth!!!!! I wasn't even remotely prepared for this and wasn't expecting it until way closer to a year or after. Kids with Down syndrome tend to get teeth later than typical kids. So when Lauren kissed me and then lovingly bit my nose I was quite surprised to feel something sharp! It looks like it's kind of in a weird spot so I'm not totally sure which tooth it is. Apparently kids with Down syndrome also get teeth in weird order. It's hard to tell which one it is since there's only one. Sheh as another one on the other side about to break through too. Now I know why she's been so fussy and chomping on everything lately!


I can't believe my baby girl is getting so big! I'll never see a little gummy smile from her again. Where has the time gone?! I was so excited about this I could barely sleep last night! Her very first tooth!!

My dad still calls me Spooky Tooth to this day. I had an extra tooth, both a baby tooth and a permanent tooth. My mom used to yell at him for calling me names, haha!

Ryan has been such a good boy lately that he got a Christmas present early!

Don't you love how he was hiding behind it? He saw this wooden farm train and loved it, so I got it for him. And then I promptly gave it to him as soon as we got home. He asked for it first thing this morning too! How do parents actually wait until Christmas when they shop so early?!

Also, back to the tooth. Do I need to brush it? I probably should remember this from when Ryan was a baby.

Sunday, November 25, 2012

Aaaahhhhh

I don't want this long weekend to end!!

Right now I'm snuggled on the couch, drinking hot chocolate and catching up on Pitbulls and Parolees. The kids are napping at my parents in preparation for Thanksgiving #2 at five oclock. 

This is the life!

I am still amazed on a daily basis that my life is how it is. When we got Lauren's diagnosis I was sure we were in for a hard, thankless and tiring life. It's definitly tiring- 2 kids in 2 years will do that to anyone. But its also enriching, full and awesome. And I absolutely love it!

Wednesday, November 21, 2012

Thanksgiving is upon us

Happy Thanksgiving!!! I'm thankful for the holiday pay I will be getting for working tonight.

Really though. So much to be thankful for. Last Thanksgiving I was tentatively thankful. Does that make sense? We had known about Lauren's diagnosis for about a month. I was so afraid she wouldn't make it. We had just learned about her need for open heart surgery. Google was scaring the crap out of me. So I was thankful, but so so afraid of what our future would hold.

This Thanksgiving we are blessed with two amazing, beautiful and healthy children. Lauren has enriched our lives more than we could've imagined. Ryan is the best almost 3 year old ever. He told me "Merry Christmas and Happy Halloween!!!" today! I think so many holidays at the same time of the year confuse him!

My mom took the kids out to lunch and around town today while I slept. The waitress first said how much she loves Lauren's little earrings, how cute she was and then said, "Can I ask? Does she have..." and kind of trailed off. My mom said she was really young. Good for her for asking. I LOVE that! Asking is so much better than staring! It turns out that her older brother also has special needs! Ryan ate really good (shocking!!) and Lauren charmed the whole restaurant. I'm so jealous that I wasn't there!

I hope everyone is as thankful as I am this year and enjoys the time with family!

Sunday, November 18, 2012

Growing up too fast!

I finally have time to update about Lauren's appointments!

We're 100% done with the helmet!! YAY! I was pretty much the worst helmet mom ever and barely ever made her wear it. So at least now I don't have to feel guilty about it!

Her audiology appointment went...okay. It showed mild hearing loss and fluid in one ear. I personally felt like the test was unreliable. They had us sit in a booth with her on my lap facing outward. They played noises and she was supposed to look in the right direction. Which sounds like it would work except then you realize that it doesn't always. Lauren hates facing outward unless there's something cool to watch. She loves faces. She loves eye contact. She likes touching our mouths as we talk. So yeah, the sound booth so was not her thing!

We're getting a second opinion! Still with U of M, just a different audiologist. We're seeing an ENT afterwards. I think it's the same doctor who did Ryan's tongue surgery last year. I hope so, he was a great doctor. If we still see hearing loss and still see fluid in the ears then it looks like tubes are in our future. I know in the long run, especially considering Lauren's surgical history, tubes are not the biggest deal in the world. But it's still surgery. On my baby girl. Again. I don't know if this mama can do that again. I'm scared.

I know it will be okay but I don't have to like it!

Lauren's been trying to get up on all fours for a while and can do it for a couple seconds. Well, today she popped up on her hands and knees and rocked back and forth! TWICE! Lord help me when this girl starts crawling, she is a wild woman already! She's also been saying dada all the time, especially while gazing lovingly at Greg. It's so adorable! I'm still waiting on Mama. She says in sometimes but not with any purpose. At least with Dada she will occasionally say it to him!

Both kids have been so adorable and loving the past couple of days. Ryan is just becoming this sweet, wonderful, caring little boy. He changed Lauren's diaper today. With lots of supervision, obviously. But he was so excited to help is "baby gull". He is growing up to be such an amazing person!

Lauren and Baby Cousin are BFFs!

Ryan loves the ducky tub
It's getting cold here in Michigan!
 

Sunday, November 11, 2012

Happy Veteran's Day!

Things have been busy here, I haven't had time to post.

Friday night we had a family over for dinner. The couple has 2 girls, Grace and Hope. Hope is 5 months old and has Down syndrome! We met them through Lisa, our mutual early intervention teacher. They are the nicest family! We had a great time and really connected. We already talked about Lauren and Hope getting an apartment together when they grow up. LOL! (Not that I'm ever ever ever letting her move away from me!!) It was really awesome to connect with another family who really 'gets it'. Their daughter also had open heart surgery at the same hospital as Lauren. We definitely hope to get together with them again soon! Ryan and Grace got along great and played all night. Ryan even let her sit in his Thomas the Train chair. I have never even been granted such an honor.

Tonight the kids and I had dinner with my grandparents! It's been so awesome with them living back in Michigan. I missed out on spending time with them for the vast majority of my life so it is more than wonderful to see them with my children. It's amazing.

Since today is Veteran's Day I got to thank my grandpa in person and tell him thanks for fighting for us. His reply was, "Eh, I didn't fight that hard." That's exactly the kind of guy my grandpa is! He joined the Navy at just 15 (he was a bit, um...creative with his birthday when he joined).

At church this morning a kid with Down syndrome happened to be sitting right in front of us! He looked to be about 13 or so. Greg and I were so excited! Then after service Ryan and I were walking around and a little guy ran up and hugged me, out of nowhere. He looked to be about 7-ish. His dad said "Oh, I'm sorry! He's special," almost apologetically. I said, "He sure is. I love hugs!"

Can you tell I had an awesome day?!

Tomorrow Lauren and I have a busy day planned. We have an appointment with the helmet people at 9. They're hoping it's a final scan and we can discontinue the helmet therapy. That would be great since we never make her wear it anymore, except for at night. She doesn't sleep on her back and she's always either being held, playing on her tummy or practicing sitting up. There's not much pressure on the back of her head so if anything, it won't be getting worse.

Then at 11 we have her audiology appointment (the hearing doctors). I have been so excited for this! I think Lauren probably hears fine right now, this is a routine scan for kids with Down syndrome at this age. But if she doesn't hear fine and needs hearing aides I am 100% happy with that. I had hearing loss as a kid that wasn't corrected until a couple sets of tubes and maturation. I've read before that the ears or the sense of hearing (or something like that) is one of the last things to mature and can improve with age for some kids. It did for me. I am a twin and we were preemies. I weighed 2lbs 12oz at birth and had surgery as a baby to correct bilateral hernias. I wasn't exactly the healthiest baby ever. I never had hearing aides, my mom said it wasn't ever something the doctors wanted to pursue.

In hindsight, I kind of wish I could've had them. I realize that I would've hated them at the time. I hated not being able to hear, I hated always having to sit in the front, I hated going to my audiology appointments and sitting in the booth for hearing tests. But to actually have known what was going on more often? It would've been way better. I just didn't want to look "different". Hopefully Lauren won't mind too bad if she ever needs them!

I want her to hear me when I tell her how perfect she is, you know?

Lauren has also managed to develop a weird rash over the last couple of weeks. It started out as just some redness behind her knee but it looks worse now. Of course I noticed it after her bath on Saturday night, when there is nothing I could do about it! I'm calling the pediatrician to see what they think. I'm thinking it's probably excema. It's dried out since this picture was taken and it really looks like excema. I might be trying to talk myself into that answer. Is that horrible? I'm so afraid it's a food allergy. I finally got a kid that will eat literally anything we give her. She had meatballs, mashed potatoes and gravy for dinner tonight. Ryan would never ever eat anything close to that. I dread the very idea of eliminating everything in her diet and building back up to see what causes a reaction. Please pray that's not it.

That may seems trivial but you don't know what a battle food has been with Ryan. I give you a short list of foods he'll eat. Fruit, carrots, celery, the occasional bell pepper, crackers, peanut butter, applesauce, waffles, pancakes, pizza, chips and salsa, Spanish rice (though not white rice), fruit snacks, candy, cookies and cereal. No joke. That's it. We can get him to eat scrambled eggs if he is heavily distracted by something interesting on TV and we can shovel it in. He will eat a happy meal if we bribe him with sips of Coke. He hates meat. Won't touch beans. I've tried giving him microscopic bites of chicken in chicken noodle soup and he spits out the itty bitty chicken bites. It keeps me up at nights that he can't possibly be growing with his measley diet. But he somehow does. The pediatrician assures us it's really common for kids his age. But I feel so incredibly guilty about it, like I'm starving him or something. I reeeeallly would love to have just one kid who will just eat.

Okay, now that I've just bared my soul, I'll give you some pictures. (Yes, the food issue is that big of a deal to me!)

The pictures were taken only 3 days apart! It's now more flat looking with the dots on the outside. It's really dry in the larger part of it.
 
She is trying SO hard to crawl lately. As you can tell from the top picture, her main motivation is the cat! She can get herself backwards pretty well, but hasn't quite figured out forward motion yet. I think we're all in a lot of trouble once she does!
 
Who wouldn't want to catch this adorable face?!
 


Tuesday, November 6, 2012

We voted!

We voted today! No, I won't tell you who I voted for. In fact I almost didn't vote because none of the candidates really seemed like the right choice for me.

Lauren came with me! She grabbed my pen and tried to eat the ballot. Go America!

Monday, November 5, 2012

Life is underway

I thought about doing the "30 Days of Thankful" post here, but remembered that I'm terrible at comitting to blogging every day. So I'll just tell you some things now. Thankful Monday, perhaps?

  • I am so thankful for my mom and mother in law! They watch our kids so Greg and I can make it work without daycare. I work midnights and Greg works days. They watch our kids so I can actually sleep! It's amazing. We would be absolutely lost without them.
  • I am thankful for our kids. The other day Ryan was brushing his teeth WHILE eating chips. Hilarious! Hey, at least he brushes his teeth.
  • I am thankful for our beautiful home. It's small but it's perfect for us right now. Added benefit of a small house- less to clean! Nothat it entices me to clean any more often.
  • Vanilla Coke. I had some for the first time in years earlier this week. It's the small things in life!
We're doing great over here at Meeting Lauren. Girlfriend is all over the place and so ready to crawl. She's starting popping up on all fours for a second or two. She's also started sitting up on her own! She can't do it for more than 20-ish seconds but man, am I proud! She started waving yesterday. She and Ryan were even waving at each other before bedtime. It melted my heart. Of course she wouldn't do it for me today though!

I'm really bummed that the election is on a Tuesday. I mean, yay politics! Woo! But Lauren has therapy on Tuesdays. Last Tuedsday was a snow day or something, I think it was because of the hurricane (didn't know we got those in Michigan!) It was pretty windy! And this week is the election. I need to see Lauren's teacher so I can shamelessly brag about how awesome my kid is update her on Lauren's progress!

He needs a haircut! Anyone volunteer to take him? It's really awful fun, I promise. He loves it.

Thursday, November 1, 2012

It was not fine.

I was recently reading back over my posts from when Lauren was in the hospital. I certainly wasn't intentionally lying, but I was definitely not feelings so upbeat.

The way I personally deal with stress is overwhelming positivity. I think it's more trying to convince myself that everything is fine than trying to convince anyone else. It's my coping mechanism.

But really, I was extremely depressed. I remember being afraid to hold her because I was afraid to get "too attached". Yeah, like it was possible not to fall more and more in love with Lauren every day. I remember thinking I would kill myself if she died. When I was pregnant and I bought her coming home outfit I remember thinking, "I wonder if I'll have to bury her in this."

I wish I had blogged about that raw emotion. I think it would've helped even more than fooling myself into thinking I was fine.

I was not fine. I was not okay.

I was terrified, I was overwhelmed. I was devestated. At one point I wondered if it would be possible to just walk away from it all. What would happen if I left and just never came back?

Watching Lauren was like a ping pong match ever day, trying to find the right combination of heart medications and diuretics to keep her stable. Then the infection set in and I wondered if she'd ever really be okay. Some days she just seemed so sick. How could a baby ever come back from that? But she did.

The day of her surgery I handed over my not quite 7lb six week old daughter. I cried my heart out. Then, do you know what I felt? Nothing. I was absolutely numb. It was horrible. When they finally came and told us that she made it through surgery and would be on her way to the PCTU (pediatric cardiothoracic unit - a pediatric cardiac intensive care unit) I physically felt the stress leave my body. It was like my entire being sighed with relief. Maybe, just maybe, I would get to keep her. I felt myself finally coming back.

Then after surgery when her lung collapsed I felt those feelings resurface. When I went to visit her that day I checked in at the desk and the receptionist told me to wait, that Lauren's nurse would come see me first. When the nurse walked out and asked, "Are you Lauren's mom?", I felt the numbness start to come back, it was like my soul was leaving my body. She quickly explained what had happened and that she would be off the ventilator probably later that day or the next day. Thank God she was right. I don't think I was even human until April 9th, the day after Easter, when I finally got to take Lauren home.

Do you realize how guilty I felt? It was awful. I couldn't talk to anyone about it, I felt like nobody understood. In hindsight, I probably should've been seeing a therapist or a counselor. I felt like anyone I told would judge me for being depressed or not trusting that things would be okay.

  I don't feel quite so guilty anymore. I don't think there are words to describe what it's like to go through something like that. It was part of my journey. I know now that it was okay to feel that way. I don't think my family would've judged me.

I don't know why I'm even writing all of this. I just want it here for the record. I was not fine. I wish I would've known that was okay.

Halloween and catching up

I hope everybody had a great Halloween! We definitely did!

Here's a bunch of pictures from my iPhone:

The kids and I with their amazing Aunt Raegan! Raegan recently got engaged!! YAY!!!

Her petals kept blowing in the wind while we were trick or treating. Ryan really liked Halloween, I think it's the first year he really "got" the whole trick or treating idea. He was still trying to eat each piece of candy right when he got it, but whatever. It was totally adorable.

Amanda and I at a Halloween party! She was wearing her adorable son as a costume- he was popcorn! She and I were asked more than once if we were twins, we love that!

Ryan and I at his preschool Halloween party!! He was saying "trick or treat!" in this picture!

And earlier in the day on Halloween we had a visit from our very favorite little guy: Baby Cousin!
I'm telling you, Lauren loves him to pieces! She loves to hug and kiss him and she even tries to make him laugh. We're already planning on them being best friends, they're only 5 months apart! Note: His name is Jesus but we call him Baby Cousin. Ryan refuses to let anyone call him anything else.

I was awful at 31 for 21, and on my very first try! I don't think my life is interesting enough to blog about every single day. I can tell you that when we first got Lauren's diagnosis I never thought that would be the case! But life is just normal. If we'd had a baby without Down syndrome (which is so weird to think about because that baby would not be Lauren) I really don't think our lives would be any different. I certainly wouldn't want it to be different.

Life is just as crazy here as I imagine it is in other homes. Want to know what happened yesterday? I was watching Baby Cousin for a little bit. I was worried about having 3 kids in the house (and I was somewhat sleep deprived, as is the life of a gal working midnights) but it started off going so smooth. I even posted to a message board of friends that it was so easy having three! I bragged that Ryan was playing with his trains, Lauren was in her exersaucer, Baby Cousin was in the baby playmat/gym and I was even making dinner! Piece of cake.

Not 2 minutes later I walked in to check on my entirely too quiet living room to find Ryan peeing on the floor! Haha! My friends loved that, I assure you. Three kids is hard work! Maybe we'll get a dog when I start feeling the itch for another little one ;)

So November is here, time for sweaters, boots, scarves, snuggles and hot cocoa. October was a great month for us, I can't wait to see what November brings!

Monday, October 29, 2012

Neurology appointment

Lauren had her EEG and neurology appointment today. The EEG was normal and there was no seizure activity! YAY! I thought that would be the outcome but it's always good to hear it from the professionals.

Then we had Lauren's neurology appointment....The pediatric neurologist we saw was a complete jerk. I really really REALLY want to use another word. Let me give you a rundown of the appointment.

Pediatric Neurologist: What made you bring her in?
Me: Well, she was having some weird movements and I know infantile spasms are more common in kids with Down syndrome.
PN: And how do you know that?
Me: Well, we know quite a bit about Down syndrome. We've known she would have Down syndrome since I was 18 weeks pregnant. I definitely had time to do my research.
PN: Oh, you knew about "it" before you had her? (Meaning Down syndrome) Well, you need to lay off the Google.
Me: (Speechless!)

PN: Is she doing [insert tons of milestones]?
Me: Nope, No, Not yet, Almost, etc... (you get the idea. This part sucks sometimes.)
PN: Oh, well those are 9 month milestones, she probably doesn't do any of those yet.
Me: Yeah, she's not 9 months old yet....

PN: (After spending literally less than 2 minutes with Lauren) So, has early intervention told you that she's like a five month old?
Me: Uh, no?
PN: Yeah, she's like a five month old
Me: Well, she's really like an 8 month old with Down syndrome

PN: So we video taped the EEG. I noticed that she moved around a lot.
Me: Yep! She's always on the go!
PN: Well we can't diagnose ADHD in babies, so we'll just say she's really active.

PN: My husband's cousin's uncle (or something equally ridiculous) has a child with Down syndrome. She's 22 now. She even went to school!
(Oh, really? Does she feed herself too? Please!)

PN: We don't need to make a return appointment, but feel free to make one if you want to.
Me: No thanks.

WHAT. THE. HECK!

First of all, she never one time said Lauren's name. Second of all, who the hell are you to tell me to "lay off the Google"? How about I Google whatever the heck I feel like? And how about the fact that I read nursing articles at work about it? And telling me that my daughter is "like a five month old"? No, she isn't! She babbles, scoots, rolls over, holds her own bottle, is starting to sit up on her own. She's like Lauren, who happens to have to work a little bit harder to achieve the same goals as other babies.

And telling me that "We can't diagnose ADHD in babies, so we'll just say she's really active." Shut the frong door! That's not a joke. It's not a diagnosis to just toss around. She acted so shocked that Lauren could possibly be an active baby. What, just because she has Down syndrome? Should she just lay there, slack jawed and expressionless? Not smiling? Not moving around?

The appointment started off on a sour note because the patient questionnaire made me check the "mental retardation" box. It's so hard for me to look at Lauren and think that's she's "mentally retarded". She's not "retarded". I absolutely loathe that word. It's not that I'm in denial about her cognition, but come on! Lets do away with the archaic terms, shall we? She's a baby! Is there a magic crystal ball that allows her to see into the cognitive skills in every child's future? I doubt it.

So yeah, I'm pissed. I think that doctor needs some serious sensitivity training. For the first time I was extremely disappointed in the University of Michigan Hospital system. I've been in a terrible mood all day because of it.

Lauren and I had a long chat on the way home. I made sure to tell her that she is NOT like a five month old. She's like an 8 month old who has to work a little harder. She is amazing. We are proud of her, so incredibly proud. And just because somebody is an adult with some extra letters after their name does not mean their opinion matters to us.

Saturday, October 27, 2012

Bitterness Broken

I've posted a lot about Lauren's heart. I've posted a lot about how emotionally challenging it has been for me to truly accept and come to terms with her heart issues. I've been angry. I've been hurt. I've been sad. I've been extremely bitter. I've written about it here, herehere and here . And I'm sure I'm missing a few posts.

One post talks about how the anger, fear, bitterness and sadness about Lauren having Down syndrome has faded away. How I wished that the same feelings about Lauren's broken heart would do the same.

I feel a calmness in my soul about Lauren's heart. I thought those feelings would never dissipate but they really have. My heart is not healed of those feelings or the overwhelming fear that something else could go wrong, but I am doing so much better.

My heart is so full with life right now. I feel a sense of vitality that I wasn't sure I could possess. Ryan is in preschool and loving it. He is developing such personality! Lauren is just this vibrant energy in our lives. She has breathed new life into this family. Greg and I are really happy.

I don't have room in my heart for that kind of anger anymore. We have a full, happy life. My children are huge joy. My husband is an amazing man to have by my side. I have a job that I really enjoy. I have meaningful friendships, although I wish I had more time to nurture them. We are blessed with wonderful extended families. Where I was able to let go of the anger and the bitterness, peace and joy have taken root.

Martin Luther King Jr said, "Never succumb to the temptation of bitterness." It really is tempting. Holding onto my bitterness and anger allowed me to feel justified. And there are still times where it sneaks back into my heart. But where bitterness engulfed me I had no room to grow. Yet none of us is promised a life without pain. I can't pinpoint exactly when I let go, but I feel so much more free and open. I feel a lightness that wasn't there before. And as the Rolling Stones taught us about life, "You can't always get what you want. But if you try sometimes, you might find, you get what you need."

I need joy.

Friday, October 26, 2012

A little respite

I happened to somehow land 4 days off in a row from work this week. I'm in the middle of it now. I worked Wednesday night and I don't work again until Monday night. I really feel like I needed this! It's so easy when life gets crazy to just stress out about having to do x, y and z. Or having to go to a, b and c.

Both kids had a sleepover with Grandma and Grandpa last night. Greg and I went out to dinner and watched the baseball game. I slept until 10:30 this morning! I might be embarrassed if I wasn't so well rested.

This evening we got Thai carryout, cleaned up the kitchen and our bedroom then went to the mall just because we felt like it! Ryan got to play with a really cool train table at Von Maur and Greg and I both got coffee. Lauren snoozed in her carseat and then was passed back and forth between Greg and I as we argued over who got to hold her. Now both kids are in bed and I'm catching up on Pit Bulls and Parolees. I might watch some Dateline NBC afterwards. I have nothing that I absolutely have to do. And it feels amazing!

Tomorrow the agenda is going out to breakfast as a family and then bundling up and walking around and playing in the park. We'll take the kids to see my grandparents, who recently moved to Michigan after 20+ years in Tennessee. I'll probably take Lauren grocery shopping. Sunday we're having dinner with about 20 of Greg's family members.

Basically, this is like a vacation from real life. I LOVE it! Life starts back up again Monday with doctor's appointments, work for both of us, preschool, classes for Greg, therapy...you get the idea. But now for it's amazing to just enjoy this little break.

Ryan as I picked him up from his sleepover with Grandma and Grandpa. He did not want to come home!
 
Lauren came with me to pick up our dinner!

Thursday, October 25, 2012

Apple bottom jeans (jeans!)...boots with the fur (with the fuuurr!)

This post needs no caption. Other than I should probably include that it was well over 60 degrees outside but I really wanted her to wear her new boots!

Tuesday, October 23, 2012

Early Intervention

It's Tuesday...therapy day!!! I love Tuesdays because by the time Lisa, Lauren's teacher leaves, baby girl is tired and I am happy. Ryan's nap time is right over therapy time and then Lauren sleeps after. Any time both kids nap at the same time is the best time of day. Most of the time therapy day leaves me feeling so proud of Lauren's progress. Sometimes I get a little down because of what she isn't doing yet, but usually I can just be happy with where she is. Today was a happy day!

Lauren did great today! She's doing really well with practicing sitting up. Lisa brought us a big box that used to hold paper. Greg used an exacto knife to cut it down so it's smaller and then cut a big spot for Lauren's legs- and an instant tray table was born! It's great, we can put toys on it and Lauren sits with her back against the couch and her tray table over her.

Lisa gave us some handouts from a book she used to have about good finger food options for Lauren's age and development since we've started with self-feeding. We went out to lunch today with Aunt Bubbles and Baby Cousin and miss Lauren sat in a restaurant high chair for the first time!!! We used a high chair cover (sorry, Aunt Bubbles, for getting mashed up graham cracker on your fresh out of the box high chair cover) and put some blankets next to and behind her for support. She loved it! That is, until she hated and it and demanded to be carried around.

It was funny, today was really the first time that I had a totally typical mom-of-an-8-month-old-girl day. Lauren was being an absolute diva this morning. She would throw her toys and then cry because she didn't have them. She wanted me to watch her play all day and would cry if I did anything else. Hello, girlfriend, you are not the only kid here! By the time we left for lunch I think we all needed some time out of the house! It's kind of nice to have days where she doesn't meet the "they're always so happy" stereotype. (Next time she has a day like this I'll deny I ever said that!!!)

And while we were eating a big family walked past our table and were commenting how cute Lauren was. One of the girls (she was maybe 13) turn and whispered to her mom, "Mom! Does that baby have Down syndrome?" I loved it! I can seriously picture in a few years Lauren and all of her rapidly increasing attitude yelling "Yes, I do!!" in situations like that!

We could use some thoughts and prayers if you can spare them. Lauren goes Monday for an EEG (electro-encephalogram) and a neurology appointment. She's been having some movements that lead her pediatrician to want her evaluated for infantile spasms (a seizure disorder). I don't think her movements look anything like infantile spasms (there are youtube videos) but it's always better to be safe than sorry. Lisa said she doesn't see any signs or symptoms of seizure activity, which put my mind at ease. I could also use some prayers that the appointment ends by 1pm (it's supposed to) so that I have time to get to Ryan's preschool by 2pm. It's Halloween day at school and I really want to be able to participate.
Enjoying a graham cracker for the first time! Molly, her doggie cousin did not understand why they couldn't share!
 
 
Oh, I almost forgot! I asked Lisa about how school would work once Lauren turns 3. I've just been wondering lately. I think we're going to want her in a special ed preschool class simply because of smaller class sizes and I worry about her making friends with special needs. I wanted to make sure we'd have the option to choose that for her. We know tons of kids her age but all of them are typical, which is fine. But I want her to have friends with special needs too. Get this...When Lauren starts preschool transportation is provided since it's public school...which means she will take a school bus!!! I almost cried just hearing about it! How incredibly CUTE! I started imagining my tiny little Lauren wearing a backpack and taking a school bus..and I'm so happy she's only 8 months old.
 
Ryan looks adorable with his Thomas backpack! I can't belive my kiddos are growing up so fast.

Monday, October 22, 2012

Making connections

Yesterday I went to Target with my twin sister and the two babies. Ryan was hanging out with Greg.

We shop, wander around and get things we don't need (is it possible to not do this at Target?!) and head to the front to cash out.

Our cashier had special needs. I don't think she has Down syndrome but I couldn't say for sure. Her line is definitely not the fastest but it's usually pretty long :) I like that!

Anyway.. So we're in line and we get to the front and she automatically says in a somewhat monotone voice, "I like your babies.". It made me think that maybe somewhere along the line in her job training they told her to compliment the customers or something, I know when I worked retail we were supposed to. I also probably had the same tone to my voice- it gets old having to talk to people after a while!

But then she really looked at Lauren and it was like a lightbulb went off for her. She said, "I really like your baby!" She definitely noticed that Lauren had Down syndrome and it was awesome! It just totally made our day!

And then we got to the car and Amanda realized that she was a theif and accidentally stole a can of beans, a can of corn and a pumpkin carving kit. And she made ME go back in and pay for them! Hahaha. This happens to her way more than anyone normal and it's always at Target. I think they probably have her name and picture in their loss prevention department. LOL!

Sunday, October 21, 2012

This deserves a post all on it's own

PIGTAILS!!!!!
 
She looks like a baby catepillar!

New Do!

Lauren now officially has enough hair to wear clips!!! I'm so excited!!!
 
Socks are so delicious.
 
So are baby cousins!
 
 

And I forgot to add this picture of the kids at the park last week playing with their grandpa!
 
It's been a busy week! Tonight we're carving pumpkins with Greg's family and then I'm also working tonight. Tomorrow I get to be the classroom parent for Ryan's preschool!
 
 

Friday, October 19, 2012

The right to choose.

Here in the U.S. women currently have "the right to choose". I'm not going to tell you my opinion in pro-life vs pro-choice. The point is that we have the right to choose.

So why do women feel judged, persecuted, ridiculed and not supported if they choose life? The right to choose should be just that. Instead many people in society and the medical community push the right to terminate.

We were very lucky (why does this have to be rare?) that we felt extremely supported in our decision to continue our pregnancy. I've heard from several women that when receiving a Down syndrome diagnosis that their doctors immediately said something to the effect of, "When do you want us to schedule your termination?". How is that supporting our right to choose?

Being given outdated and often grossly incorrect information while counseling a woman that she has a choice is just as bad. Women are told that their child will amount to nothing more than an empty husk of a person. And it's. Just. Not. True.

Luckily there are people today that are really making a difference. They're showing women what it's really like to make a choice of life. We received wonderful information from the genetic counselor at University of Michigan Hospital. She immediately offered to put us in contact with a woman who made the same choice we did. We were given books, websites, tissues, hugs and privacy. Never ending support. I met a community of women who knew exactly how I felt.

Our families rallied around us like we'd never imagined. We had friends praying for us every single day. People dropped off books that they thought we would like. Our church family let us know how excited they were to meet our little girl. We talked up how great it would be to be a big brother to Ryan. Everyone loved this sweet little baby growing in my womb. How could we have known that she'd turn into Lauren? It's really hard to have a prenatal diagnosis sometimes because you go through the grieving process without a baby to hold. It's so easy to be come terrified of the stereotype.

And then, as if by magic, when you deliver your "diagnosis"...she turns into a baby. A beautiful, pink, chubby baby. Who cries, eats, poops and sleeps. Then she turns into this awesome little girl who cuddles, plays, babbles, steals food from our plates, shares toys with her brother. Sleeps on her tummy with her feet hanging out of the crib. Gives messy, wet kisses to people she loves. Expresses absolute joy when the cat comes close by. Chases her aunt's dog around the living room. Nibbles on her baby cousin. Smells like lavender. Splashes in the bathtub and stares at her mama with wonder.

She becomes a person. The best choice I ever could've made, don't you think?

Wednesday, October 17, 2012

Swings!!

Lauren got to try the swings at the playground for the first time today!! She LOVED it!


And here's Ryan's first time on the swings!

The October I Never Thought I'd Have

When we got Lauren's diagnosis I thought our lives were over. I thought we'd never go on trips, we'd never go to the zoo, never go to a cider mill, never go out to dinner, spend time with friends....You get the idea. I imagined a dull life at home with a child who couldn't go anywhere. Well I absolutely promise that we have done all of those things since Lauren was born!

So today was amazing because it was Lauren's first time at a pumpkin patch!

 Ryan loved it, as usual. He was talking about riding a pony nonstop since I told him about our plans yesterday. I love seeing him so excited! He got to ride once when we got there and once before we left.
Lauren had her first pony ride too! I assure you that we were not squashing the tiny little horse. I was standing next to them!
And Lauren apparently LOVES pumpkins!
 
 
Cheers to all the things that a person with Down syndrome CAN do!
 
 
 
 



Tuesday, October 16, 2012

Catching up

I have been so bad at actually doing the 31 for 21! I don't think I have enough to say to actually blog every day. My life is so not that interesting. Also we were out of town.

Lauren's therapy went pretty good today! I sometimes feel like she isn't really making any progress and that makes me sad. I know it's irrational, but I've caught myself wondering, "What if she never ever sits up on her own, crawls or walks? What if she's just like this, forever?!" I know she'll do things in her own time but sometimes I wish I didn't have to be so patient. It can be a challenge for me to have patience.

But guess what Lauren did last night?! She was sitting in her high chair while we were eating dinner. I decided to give her some puffs to see if she could pick them up. I've been feeding her little bites of pancake, biscuit or anything else we eat but I haven't really let her try to self feed in a while. The last time I tried was maybe a month ago and she was nowhere close to being able to do it.

So I put a bunch of puffs on her tray and let her explore. She grabbed one with her whole hand and actually brought it to her mouth! She probably would've gotten it in but I was so excited that I screamed and it scared her. She missed her mouth and it stuck to her face! Hahaha. I love this girl! She was doing so good. She kept getting them in her hands, getting so excited and then totally forgetting that she was supposed to eat it. She'd just grab another one. It was so adorable!!

I was so excited to tell Lauren's therapy teacher about it! Lisa was just as excited as I was! She gave us the go-ahead to start with some more textured foods. She suggested mashing a banana or a sweet potato and letting Lauren play and explore with some different textures. She said to help Lauren learn to get it into her mouth and know that she's supposed to eat it. I am so excited for this! The pediatrician told us last month to wait until either she or the therapy teacher gave the go-ahead to try foods other than purees. I think it's because babies with Down syndrome can have "floppy airway" issues. I didn't totally listen since we've been giving her bites of pancakes. But I'm glad we have the real "permission" to try some new foods!

I was anticipating this so I bought a big butternut squash to bake. I'll probably make some into a puree but now I'm so excited to know that I can mash it up and let Lauren try it! We've been given the advice to let her eat while naked...I think it's going to get pretty messy around here.

Here's a picture from our weekend. We were at Uncle Blake and Aunt Wendy's wedding! Ryan was too busy dancin to stop for a photo:

Here's a picture of Ryan before we left. We were out to eat and he wanted to sit by himself...until Aunt Chelsea came to sit with him and then he was in heaven!
 
And in honor of the amazing month of October- here's Ryan and I on his very first Halloween! I can't believe this will be his third Halloween! He was a dragon the first year, a monkey last year and this year he'll either be a rooster or a police man. We have both so he'll get to choose the day of.
 

Isn't he the cutest little dragon you've ever seen?!