Craftshop

This blog has seen better days, folks. I've been busy. Raising kids and all. But I've come back with good news. Big news. Exciting news.....I'm NOT pregnant.

So, about a month ago, I was, stalking, on Instagram and I came across a profile that cause a light bulb to go off in my head. What if Tara and I hosted crafting workshops? We both LOVE to craft and are always texting each other our craft project outcomes. One text from me to her asking her if she was in and everything changed. We should do this. We COULD do this. We ARE doing this.

Craftshop is a crafting workshop. We will walk you through 3 craft projects, from beginning to end. Our first session is Saturday, January 17th at 1:00. You can find more information out on our website http://craftshop2.weebly.com.

We are just 2 friends who met in high school and came back together a few years ago after having kids. We bonded over many many things....but Craftshop is the ultimate collaboration.

We hope you can join us!

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. 

Brooks is here!

Well he has arrived. Brooks Nikolas was born on Friday, November 22nd at 10:34 am. He was 6 lbs 14 ounces and 19 inches long. He is a calm, sweet, go-with-the-flow baby. We love him. His sister loves him....until she doesn't. Then she "gently" pushes him away.

There will be a birth story soon enough but for now, these pictures will have to do.

Harper's first few days after she was born were an emotional roller coaster. We were not sure if she would have to go to the NICU or what her plan was. I remember lots of blood tests, car seat checks etc. The nurses woke me up every 2 hours to feed her. With Brooks, we were thrown into it. No extra tests and no waking me up to feed him. Strange, I thought. But apparently normal!

He is a healthy 7 lbs 8 ounces and continues to eat and sleep like a champ. I can't wait to get to know him more!

Meanwhile, let's see what Miss Harper is up to.....

A friend needs help...

This spring/early summer Harper was feeling yucky. We had taken her to the ER on a Sunday and they said nothing was wrong with her. Well I didn't agree. To make a long story short, my mom watched Harper the next day and we ended up taking her back to the ER. I told Andy to stay at work because they would probably just give her an IV and send her home. Well, an IV turned into blood work which lead to confusing results. We were told that her white blood cells and platelets were low so they ran more tests. I already knew that kids with Ds are more prone to Leukemia but this was a big slap in the face. They ran more tests and we were told if they came back abnormal that we would be admitted ASAP. Our luck, they came back half abnormal so it was our choice to be admitted or not. We chose to go home. Scary for us but not the point of this post. 

I can talk about my feelings and emotions at the time but I don't think I have to. The first thing I did was  message my friend Becky. Becky's daughter, Tessa, is only 15 days older than Harper and they live in our area. We've met a few times  and MADSS events. This year, Tessa was diagnosed with myelodysplastic syndromes (MDS, formerly known as preleukemia). I felt awful venting to her about the possibility of Harper having Leukemia when her daughter was living it. But Becky helped calm me. All from a Facebook message. 

Harper's tests were read from a specialty doctor the next morning and she was cleared. It was a nasty virus taken over her system. Not Leukemia. But this post isn't about Harper. It's about Tessa. 

Today when I got home from work I was scrolling through IG and saw a picture of Tessa at the hospital.......Tessa's preleukemia has officially turned into Leukemia. She's scheduled for surgery tomorrow morning for her central line placement as well as a platelet transfusion. She needs prayers. Her mom, dad, big brother, and little sister need prayers. Tessa is a fun, loving, on the go two year old who shouldn't be spending her time in 
a hospital. 

Look at how sweet and sassy Tessa is. This could have, and still could, be Harper. While kids with Ds have a better chance of fighting off Leukemia, it's not something any child should go through. 

I'm squeezing Harper tighter tonight. 

Neither one of them wanted to cooperate

Go Tessa GO!

Down syndrome Awareness Month

October is Down Syndrome Awareness Month. In the past I have blogged every day to raise awareness. Frankly, that is just not going to happen. I guarantee it. I'm 33 weeks pregnant and feeling every centimeter of it. I'm tired and chasing after a 2 year old is hard work. At least I'm honest people. I'm spent by the time I get home from work.

I think that Down syndrome has become a part of our every day life that I forget it's there most days. Did I forget that Harper can't walk yet? Hell no. But her burst of language makes up for it. Her sassiness makes up for it. She is who she is. And she WILL hit her milestones when she is good and ready to. And on her own terms.

With that said......I've had a few things happen to me lately regarding Down syndrome.


I was on a panel in August to speak to potential Genetic Counseling students. I have a great relationship with my genetic counselor and she asked me to be on the patient panel to tell prospective students my experience with genetic counselors. It was a fantastic opportunity and one that I took seriously. While I wasn't there to speak specifically about Down syndrome it was still my job to advocate and raise awareness. I was able to tell them how their job would impact a life. I felt like I contributed something to society and maybe helped a few students decide on their career path.



I've meet a few soon-to-be moms who may or may not be pregnant with a child who has Ds. Exciting right? Well, I have to take myself back to that time where is wasn't exciting and remember how I felt. It was scary. Both of these mom's do not have an official diagnosis. One is far enough along that she is going to wait until he is born. The other is just starting her second trimester and has testing options she hasn't decided on.  But it's hard for me to contain my excitement. Yep, excitement. To me a baby is a baby. Whether he/she has Trisomy 21 or not. That baby deserves to be loved and for someone to be excited about their arrival. I want those moms to see how happy Harper is and how happy Harper makes me, her dad, her family and friends. I wanted so badly to celebrate my pregnancy with Harper that I want these moms to be able to as well.

Over it. 

Really over it. 

Diva in the making 

This is the part of the post that has taken me the longest to write. I have drafts sitting waiting to be published but nothing came out right. I'm sure not sure I did it justice. Here goes....



Through Facebook, I have been able to keep in touch with Tanya, a friend of mine from high school. Tanya and her older sister Tina, had an aunt, Ruthie. Ruthie lived with them growing up. Ruthie had Down syndrome.

At the time I had no idea how much of an impact Ruthie would have on me and my family. I wish I could go back and tell my high school self to pay closer attention to Ruthie. I do have memories of Ruthie. She was at all the sporting events Tanya or Tina were a part of. I remember going to Tanya's house and Ruthie was there. She was friendly and funny and didn't make me feel awkward. She was one of the few people with Ds that I actually knew. You could tell she was loved and that she loved fiercely.

While I hadn't seen Ruthie in years I had thought about her often after Harper was born. Ruthie gave me hope that Harper would be loved and taken care of. Ruthie gave me peace of mind. She was a living testament to what I want Harper to be. She wasn't a burden to society. She was a blessing.

I've thought of her even more now that I'm pregnant. Ruthie was the older sister. Her younger brother loved her. Makes me have hope for that future that Harper and her little brother will have a special bond that will be unbreakable.

Not that long ago I heard that Ruthie was sick. I started to think about her more. Think about Harper's future. Would she live with her younger brother? Would she be an aunt? What does her future hold? In the beginning of September, Ruthie passed away. She passed away from a family who loved her fiercely. To quote Tanya, "Ruthie is the most amazing person I've ever known or loved." That my friends is what life is about.


As I write this I'm watching Harper on the monitor holding her baby doll while she should be sleeping and saying "hi" over and over again. She melts me. And I'm so proud that she is my daughter and excited to see what type of big sister she will be.