Tuesday, January 14, 2014

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. 

Wednesday, January 8, 2014

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!

Friday, January 3, 2014

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.