Down syndrome and us

I started writing this blog more than 2 years ago because Harper was born with Down syndrome. I haven't written much in general, let alone Down syndrome because I've been busy growing a human in my belly, delivering and caring for said human all while chasing around a crazy-active 2 year old. 

Truth is that despite how busy I've been, Down syndrome has been in the front of my head more than ever. I know it shouldn't be. I should be preoccupied with Brooks...and I am but meanwhile I'm spending more time with Harper. Harper is only going to school while I'm on leave 2 mornings a week. Yep, she went from going approximately 50 hours a week to 10. She needs to go back full time but that isn't happening until I go back to work in February. I constantly struggle with trying to let her be a kid but also trying to teach her words, signs, and how to walk.

Since Harper's diagnosis we knew that we wanted her to have a sibling close in age to help push her etc. Harper is almost 2 1/2 but is no way comparable to other 2 year olds. She hasn't her her milestones like a typically developing 2 year old. 

She is still not walking. Until I was in the hospital having Brooks, she would not like to stand on her feet or even think about taking steps while holding your hand. Now she is asking for you to help her walk. I think she needed the time away form school (and maybe me) to get motivated. Thanks to my parents for helping her.

She speaks her own language. Don't get me wrong, she has plenty of distinguishable words and signs she uses to communicate. "No," being her favorite. She understands what you are saying and can, usually, answer your question correctly with a yes or no.

She remembers what some animals say: dog and cat for sure. We are working on sheep, cow, bear, and snake. 

People tell me that when she starts walking I'm in for a world of pain. What those people don't understand is Harper gets into a lot, and I mean A LOT, of trouble even though she isn't walking. She can quickly get around our house and find something to pull up on that she isn't supposed to. She also knows to do it while I'm feeding the baby. She is a handful now and walking is not going to change that. She is working so incredibly hard at everything that I can't wait for the day she speaks in complete sentences and can run to me because I will know the struggle it was for her to reach those milestones.

Back to my point: even though I am not comparing Harper to other 2 year olds daily like I would be at work, I do realize that Harper is behind her peers. It's hard on me but not for her. I've written in the past that it's my job as her mother to get over this. I'm trying. I'm trying to let her do things at her own pace. When I do (and I have) she starts to excel and meets her next milestone. This will always and forever be my problem and my struggle. 

Miss Attitude

Down syndrome sucks. It really does. I know that without Down syndrome Harper wouldn't be the same girl but really it sucks. But Harper is loved and accepted by pretty much anyone she crosses paths with so I know I need to let my hatred for Down syndrome go. But it's easier said than done. 

At the end of the day, I am sitting here in my bed blogging because my 2 favorite kids are fast asleep in their cribs and I'm drinking a glass of wine in my pjs. I am a proud mama to 2 great kids who will grow up to be the best of friends and it doesn't matter if Harper has Down syndrome. 

Being a mom of 2

I know there are lots of moms who read this blog. I have one question. What the hell were we thinking? My friend Becky and I had a quick conversation about this last week. She had 2 under the age of 2. I have 2 under 2 1/2. I know the lack of sleep, clean floors, endless diaper changes, and clean clothes (hell, who am I kidding, I'd take any shirt/robe/sweater that hasn't been spit up on and wear it out on a fancy date), is worth it. Wow that was a long run on sentence. I apologize but these 2 kids have decided to gang up on me. One is sleeping...the other is awake. One is eating...the other one is taking her newly independent stair climbing on her own, then falling. Both yell at the same time while the dog is barking outside at a leaf floating by. We are definitely in crazy town and have brought toddlerhood on the train ride with us. When both are asleep I try to either: sleep, clean, or last night I chose to drink a glass of wine.

Yep, booze. Booze and coffee is how I am surviving. Oh and Mickey Mouse Clubhouse and the occasional Doc McStuffins.

All kidding aside, we are doing fine. Brooks is a great baby and a great addition to our family. He is starting to smile and giggle which makes my heart happy.  He is pretty laid back, which is good because his sister IS NOT right now!

Best we could do. 

Hey there ladies!

Two years ago...

Two years ago today was a hard day, we were preparing for Harper's open heart surgery. I remember that day  like it was yesterday. I remember our pre-op appointments were terrifying. The lab techs couldn't find a vein to get enough blood work so they sent us home. Hours later the hospital called and told us we HAD to have blood done so we went back in. Tears streaming down my face. It was terrible lead up for what the real procedure was about.

I remember what Harper wore that day. I remember cuddling with her when we got home. I remember crying. I remember not being able to cry enough. I remember my friend Kristin coming to my house to hand deliver me a necklace that brought us so much luck. I remember taking a shower so I could fall to my knees to cry and pray. 

Just like last year, I took Harper (and this year Brooks) to visit the PICU staff at AFCH. We brought them a basket of goodies to show our appreciation. We even got to see one of the nurses that helped take care of her. It was great to show our love and appreciation to the many who helped take care of our baby. 

We were lucky that Harper recovered so quickly. We have been lucky that we haven't been back to be admitted. Many kids with Ds are frequent visitors to their local children hospitals and (knock on wood) we have avoided it. 

Tomorrow we will celebrate. Between diaper changes, bottle feedings, and a crazy 2 year old screaming at me. But by gosh, I will make time to hold H a little tighter. 

What's been going on.....

Well a lots been going on around here since I blogged last. I'll skip the apologies but this pregnancy has gotten the best of me.

Yep, 28 weeks tomorrow! Welcome to the third trimester! This little boy is due November 26th!

First things first, Harper is TWO!

We had a luau themed birthday party. It was adorable and Harper actually enjoyed opening the gifts. She was a little side tracked by the gifts but once we put all of the wrapping paper away, she realized she had some AWESOME gifts.

And here is a party belly shot....

And Harper's new obsession.....she has turned into quite the naughty girl.

Harper is ONE!

I have tried so many times to write this post. Just the thought of this day has put me in tears for the last few weeks. Today is no different. But I am going to power through. Today was a celebration of the wonder she has brought since her arrival one year ago.

Today at 11:54 am I was out to lunch with co-workers and Harper. Last year at 11:54 am I was in an OR delivering my baby girl. Today my co-workers "oohhed and aaahhed" over how cute and well-behaved Harper was sitting in her high chair. Last year the nurses and doctors (along with Andy and myself) were impressed at how healthy Harper was. Under 5 lbs, heart defect, and over 3 weeks early.

Last year...

The day was a whirlwind and one that I remember every detail of. I was wearing black yoga pants, and a blue and white striped cardigan. My hair was in a low pony tail. Andy was dressed for work and joked with the nurses that he needed to transform into Dr. Clooney. He was trying to soften the mood. I'm pretty sure I told him to "knock the f*&# off!"

We knew the Friday before that we were most likely going to have H early. My OB gave me her personal cell phone number so I could tell her (before anyone else) what the specialists decided. She canceled her appointments for the day to come deliver Harper. Dr. Burns held my hand and wiped my tears away while I was getting the epidural. She didn't have to do that but she loved Harper from the beginning. She was proud of us and was the perfect person to deliver my angel.

Turns out that the whole hospital knew about Harper. They were expecting her in the NICU. They were ready for the baby girl with Down syndrome and a complete AV Canal defect. They were stunned and happy when she was too good for them. News spread fast. I found out this out not too long ago from a few different people. The hospital was proud of Harper without ever meeting her.

What a difference a year makes.

Today...

I took the day off today to spend it with H. Andy is traveling for work so it's just me and my girl. And as Kelle Hampton would say...today was made of unicorns and rainbows. 

Harper slept in an extra hour, started whole milk today, started bringing her sippy cup to her mouth herself, made many more "close to crawling" motions, and actually put some weight on her feet. 

I realize these are milestones that many "normal" one year olds have already mastered. But my Harper is doing things in her own time. And who cares? She is the happiest baby I have every met. She has a fantastic family, great friends, and many other people that love and adore her just the way she is. I wouldn't change her for the world. 

Today she grew in front of my eyes. We sang. We danced (ok I watched Glee 3-D movie too many times this week), and we bonded. 

She has found her voice for months now but, boy oh boy, was it out today. She was so talkative in the mall that 2 ladies had to stop and talk to her. Yep, that cool kid is mine. And she is wonderful. 

Help needed...

Thank you to all who came to Harper's party and thanks for the gifts but I'm asking one more favor. Join Harper's Heartbreakers for the Madison Area Down Syndrome Society Step Up for Down Syndrome Walk on October 13th. If you can't walk...we will take your money too! No seriously, we appreciate every penny and every step you can contribute. Please visit here for more info. 

You all know her story and you know how much paying it forward means to me. We have been welcomed in the Ds community with open arms and enjoyed educating/involving you along the way. Without events like the Step Up for Down Syndrome Walk and fundraiser, my voice wouldn't be able to be so loud. 

Thank you for the love you have shown my family the last year. The comments and emails that I receive from perfect strangers have touched my heart. This year has been amazing (and fast) and we look forward to sharing many more with you. 

9 month milestones

I'm competitive. But I am a good sport. When I lose I know I gave it my all. When the doctors told me that Harper had heart issues, one of my first questions was "Will she be able to play sports?" There answer, "Yes of course." I want Harper to have a competitive spirit, maybe not as severe as mine, but I don't want her to settle. It's my job to teach her that. And it started this week.

I took Harper to her 9 month appointment with her pediatrician this week. I was given a milestone checklist upon check in (which I had no time to fill out in the waiting room because at 9 months, they prick H's finger for tests and then tell me that they no longer put band aids on children because they should swallow them. The lack of a band aid leaves me with a baby full of blood stains and my fingers as her gauze).

The checklist was miserable. I was to pick if Harper completed these milestones: All the time, Some of the time, or Never. Dude, seriously, the girl was born 3 1/2 weeks early, had OHS at 4 months, and has Down syndrome that is notorious for children having low muscle tone.

Does your child "walk" next to the couch? Nope, she can't sit up yet. Does your child crawl? Nope, she can't sit up yet. Does your child take steps unassisted? Nope, she can't sit up yet.

Thank goodness for Harper's reputation at the clinic as being adorable, cute, and heart melting. Because the nurse took the checklist from me and told me to not worry about it. Instead, she asked me questions that could answer in a positive tone, rather than selecting NEVER for all of their questions.

Even with my competitive spirit, I knew at that moment, that I can't make Harper competitive with other children regarding milestones. She has to be competitive with herself. We have to challenge her to reach her goals and the goals we help her set. Even though I wanted to cry during the checklist, I knew better. I know that Harper will reach all of these milestones...on her own time. But first, we need to help her sit up unassisted.

Watching Signing Times on the iPad

Sitting up. We are getting there. Our OT, Julia, has given us tips and tricks that we are using on a daily basis. Her struggle is that she forgets her thighs and booty are meant to help her balance. Harper loves her Bumbo chair with tray attached. Her new thing: throwing toys on the floor until we pick them up. Over. And over. And over again.

My competitive spirit is what will drive me crazy but it is what I need to use to help Harper thrive!

Thinks it is funny to throw her toys

Chaos

One Year Ago Today

One year ago, I woke up with excitement and anticipation of learning the gender of our baby. I knew it was a girl. I had, pretty much, forgotten that 8 weeks earlier my First Trimester Screen came back flagged for Down syndrome. The chance of a false positive was higher than our child actually having Down syndrome.

I remember exactly what I wore. It was going to be my lucky outfit. When I was home after the appointment, I remember thinking that the outfit was cursed instead of lucky. A few weeks later, I wore it again and made sure to say out loud, "this is a lucky outfit." 

I am not going to relive all the details of that day for you. But I will remind you that yes we were shocked and saddened but we quickly realized that Baby Girl Bohacek was just that....a baby girl. She needed us. We told our family that. That she was a baby who happened to have Down syndrome and a heart defect. And that we loved her.

Man, do we love her. 

May 6th, 2011 will forever be in my memory. It is the first of many anniversary's we will celebrate with Harper. Having a child with Down syndrome and a child who conquered Open Heart Surgery makes every day a celebration. I look back at this day with sadness for my sadness. I wish I knew how normal life would be. How amazing Harper is. How she can keep me up at night but when I see her smile in the morning I immediately forgive her. She definitely has made life interesting and changed it the second she was born. 

I look back at this day with gratitude. Gratitude for the wonderful medical professionals we were blessed with. Everyone we encountered that day was amazingly supportive. Laura, what would we have done without you? I hope you are reading this and know that we survived because of your kind words.

I look back at this day with love. Yes, I was sad and heartbroken. I was mourning the loss of a healthy child. But I now LOVE this day. I am able to pinpoint the exact day that I turned into a mother and Andy a father. We had to make difficult decisions for another person. Life altering decisions were made on May 6, 2011. This day turned us into parents. We chose to do an amnio for us but we chose not to abort...for Harper. 

I look back at this day with a huge smile on my face. Harper is the ketchup to my fries, the water to my ocean and is the smile to my face. I adore this little one. She radiates happiness. 

May 6th, 2011....Thank you.

 

Onward and Upward

Well we did it. We are facing the bullet head on and officially have our house on the market. It was easy until I saw it online and it became all-to-real when the orange and black signed graced our front yard. Selling your house is no joke. Our life is officially in limbo. You want to start looking for a new place but you can't fall in love until your house sells. We have already had 2 showings and the house has only been up since Friday. But my wheels are rolling and I'm itching at the thought of a new place to decorate....I mean a place for my kids to grow up.

Gallery wall is down :(

I also had a change at work. Same job different school. It was a sad decision but the right one to make. It's odd how every decision I make now I have a little H to think about. My new school is 3 minutes from our house (and hopefully the new house) and in the same school district H will be in. With a new school brings a whole new crew-teachers and families. And with a new schools means I have to look the part right?!

Andy doesn't understand why I take pictures like this! 

Showing our support for Hat Day

Harper's milestones: 

Rolling over both directions and rolling off of her tummy.

Gets mad when I don't move the spoon fast enough to her mouth.

What she eats:  peas, carrots, squash, sweet potatoes, pears, bananas, apples, potatoes, and zucchini (yes I make it all)

Wearing 6 months tops and 3 month pants

Bows officially stay in the entire day

Babbling all the time

Will sleep on her tummy at school but not at home (yes she moves herself there)

Doesn't like to poop

Naps are limited

She knows she is cute! 

Staring at Brewer

Fav yellow cardigan

On Friday night I babysat Emersyn and Weston at our house. Scratch that, Emersyn babysat me and Harper. Seriously, this 3 year old has mad skills. She is the baby whisperer.

Weston watching over H on the video monitor

And again...

Loved Brewer and throwing treats out the door.

And a few more pics from the week to satisfy your craving...