Tuesday, August 30, 2011

See ya summer, it's been fun.

This past weekend marked the end of summer for us. Missy went back to school yesterday, so her boys came to play for a few days. Katherine and Alec start Kindergarten on Thursday (Eek! Can you believe it? Where did the time go?!!?), and Will and Sam start preschool next week. After next week, I will have three mornings a week with just me and Charlotte; I'm not sure what to do with just one kid! I plan on keeping her busy; so far we are signed up for swimming lessons and an adaptive gymnastics class with her PT.

This past weekend, we said farewell to summer with a trip to Greenmeadow Farm. Missy and I took the big kids; Charlotte stayed home for some one-on-one daddy time.





After our farm trip, we had a cookout with some good friends. The kids had fun, the food was great (including the awesome cupcakes Alison brought...yum!), and the company was delightful.

 (Harper is 8 days younger than Charlotte; they are good buddies...though Charlotte learned the hard way she can't stick her fingers in Harper's mouth.)

All the kids crowded in the clubhouse eating cupcakes.

"Dad, your gonna give me some, right?!"

Sam's favorite place to be.

On an unrelated note, this is often how we find Charlotte if the older kids are outside playing:


Fall brings lots to look forward to in our house; Katherine and Will's birthdays, Charlotte's healthy heart day,  the Buddy Walk (if you haven't yet, please join our team....we are going for the largest team award, I have faith we can do it!!), trips to the pumpkin patch, trick-or-treating, raking leaves....wait, we don't have trees in our new yard...anyway, a few zoo trips (best time of year to visit the zoo), and many more. I am a bit sad to see summer leave us, to send my oldest to Kindergarten, and return to our "school year" routine, but after spending last fall anticipating open heart surgery, I know this fall is going to rock. Stay tuned.

Tuesday, August 23, 2011

Sometimes, it's still hard.

Charlotte is coming up on 15 months old, and we are all doing pretty well. I love my girl more than life itself; I would do anything for her. She has become an integral part of our family and it is hard to remember life without her in it. Our days are better because she is here and we thoroughly enjoy watching her grow and learn. I no longer worry when I am out in public with Charlotte if others notice that she has Down syndrome. In fact, I am dang proud of her, and welcome stranger's comments about how cute she is. Gone are the days of me worrying about what others think. I can freely talk about Down syndrome without tearing up, and I now welcome the opportunity to educate others about it. Down syndrome no longer occupies my every thought, and the days of sadness are long gone.

However, sometimes, it is still hard. Occasionally, I will see an individual with Down syndrome in the community and it will make me sad for one reason or another (on the flip side I also have had many times where I have been encouraged by others!). Sometimes, I get knocked off of my idealistic cloud that I tend to ride on, and am reminded that Charlotte will face challenges in this world that my older two children will not. Sometimes, I get really mad at that 47th chromosome for adding these extra challenges to her life.

During the past 15 months, I have met some amazing people because of Charlotte. A few of these people, I am proud to now call my friends, as we are bonded together by our children's extra chromosome. I have a long way to go; I am slowly immersing myself into the Down syndrome community. I am not going to lie; it can be overwhelming at times. There only so much I can participate in and read about; after all, we do have a life outside of Down syndrome! I tend to hide behind my computer and read blogs and message boards, as it is at times easier than face-to-face interactions. It also protects me from those feelings of sadness that sometimes still pop up.

As you saw in the last post, we are raising money for Wisconsin Upside Down during their annual Buddy Walk. I whole heartily believe in the cause; raising awareness and acceptance for my daughter and those who share her extra chromosome is so important for their future. I am honored to have so many of our friends and family participate with us. Last year the walk was a few weeks before Charlotte's open heart surgery. I attended, though, I gotta tell you, it was hard. Those feelings all still fresh, with less than four months under my belt. I am in a better place this year, time really does heal all wounds. I also know that next year will be even easier, and the year after easier still.

I guess the purpose of this post is to point out we all deal with things in different ways. There is no time requirement on how long it takes to accept your child has a disability. Each one of us needs to do what feels right, without judgement or pressure from others.

A friend of mine, who has a daughter with Down syndrome, recently asked me if I felt that I needed to "do something great", and use Charlotte's disability to achieve this. I do feel like there is an unwritten expectation in the Down syndrome world to advocate and raise money for awareness. However, I am trying to stick to what I feel comfortable with, when I feel comfortable doing it and trying to avoid all pressure to do more.

And frankly, the only "great thing" I want to accomplish is to be a good mom to my three children. 46 chromosomes or 47....in our house, it really doesn't matter; they are all loved and treated the same.


Happy Tuesday everyone! There is a lot of positive energy floating around our house right now; the new swing set comes tomorrow!! Pictures to follow, the kiddos are pumped.

Tuesday, August 16, 2011

My wish.

I wish my Charlotte could go through life without adversity and stereotypes. I pray that she will never be on the receiving end of ignorance. I hope that one day the "r-word" will be non-existent, inclusion will be the norm, and others will know that individuals with Down syndrome are just like the rest of us.

However, though society has come a long way in the acceptance of those with disabilities, the reality is we aren't there yet. It is estimated that over 90 percent of women will terminate a baby known to have Down syndrome. Hollywood producers think it is okay to use the word "retard" and "downsy" in films. Many medical professionals still refer to my child as a Down's baby. And while inclusion is becoming more wide spread through the public schools in this country, there is no guarantee.

In order to get to the place of total acceptance, we need to educate. To spread the word; having a child with Down syndrome is not scary! To let the big wigs in movies and television know, we will not tolerate the use of disability slurs. And to shout it from roof tops, those with Down syndrome are capable, loving, intelligent human beings who deserve equal opportunities.

It is because of this that we are raising money for Wisconsin Upside Down's annual Buddy Walk. On behalf of Charlotte, and others with Down syndrome, we want to spread awareness and acceptance. Missy has once again offered to organize "Charlotte's Web" for us. I have copied her email she sent today below, please consider joining us. Thank you.


Fourteen months ago, Charlotte entered this world and began changing lives immediately.   Unknowingly, Charlotte has set out from day one to prove that she is more alike than different.  She loves  the water, climbing all over her siblings, making messes, and going after anything she is not supposed to have. 

Charlotte inspires and humbles me daily.  She teaches me everyday about the person I want to be, the young men I want my children to become, and the world I want to live in.   I want her to be accepted for the amazing person that she is and she deserves nothing less...we all do. 

Every time I hear the song "My Wish" by Rascal Flats, I think of Charlotte.  This song so clearly articulates all of my wishes for her, it brings me to tears each time I hear it.  Please take a few minutes to watch the phenomenal video Emily made to share Charlotte and this song with you. 

 I am so proud to be able to organize Charlotte's Web.  She is surrounded by an amazing web of people who love and support her and her family in all that she chooses to do.  Please join us for this year's Buddy Walk on October 16th to help raise awareness and acceptance for Charlotte and all others with Down syndrome.  Help make my wishes for her come true.

Here is all of the information you need to join our team..

What:  Wisconsin Upside Down Buddy Walk
When:  October 16, 2011 at 10:00 am
Where:  Steinhafels off of I94 in Waukesha
Why: This event is sponsored by Wisconsin Upside Down, a local organization which provides information, advocacy, and support for individuals with Down syndrome and their families.

To join our team or donate:


Once on the website...
 - Click on "Join our Team"
- Agree to the waiver
- Fill out your information, if you do not want to make a separate fund raising page, you can leave this section blank.  Unfortunately you will have to register  and create a user name for each person in your family separately.
- You will want to register adult walkers under "TEAM"

To make a donation:
- Click on the "General Team Donation" tab  :)

Please let me know if you have any questions and feel free to pass this on!
Thank You,

Wednesday, August 10, 2011

Wordless Wednesday: Random

I have had a few complaints about the lack of pictures lately. This random post is for the complainers. Happy mid-week!

Big tub is a favorite in the new house.

French fry anyone?

Or strawberry shortcake?!?

Learning letters with her big brother.

What's up?

Friday, August 5, 2011

Settling in.

My camera is in a box somewhere. My goal is to find it today, though I have lots of goals for the day, so lets hope it gets done. It has been a busy week filled with a few unexpected surprises, but all in all, we are thrilled to be home. The house is still a state of disarray, towers of boxes in every corner and still working on finishing painting. But, the kids now are settled in their own rooms, their toys that they haven't seen in months are unpacked and being played with, and their bikes litter the driveway.

The move went really well. We are incredibly grateful for everyone who helped us. It was quick, and almost free of disaster (except for the hole in couch and scratch in the floor). At times it was almost kind of fun.

Huge thanks go out to....

All three of my brothers and their  respective wives/significant other. Paul, thanks for going back a second time to get the rest of the load we couldn't fit on your truck. Sorry I got the wrong wings. I owe ya. Erin and April, you guys are AWESOME. Unpacking the kids stuff, assembling the crib, pulling staples, unloading the truck, you did it all. Christine, it was so nice to have the big kids out of way for the day and having a blast with Drew and MaryAnn. They came home exhausted, and excited to tell us about their day. Peter, thanks for giving up valuable weekend time to help us. We know you are super busy in the summer, and were thrilled to have you help! And Andrew, I know your brothers think you are the weak one, but I think you proved them wrong. Thank you.

To Jim, our former neighbor, for giving up a Saturday to help us, and his wife, Melissa, for being okay with him being here when I am sure they had plenty to do at their own house. We really, really appreciate it and would like you guys to buy a house in our new neighborhood. We miss you. Can you work on that?

To Chris, for helping both Friday night and Saturday morning. It was so nice to get the first load out of the way on Friday night. Too bad it was the heaviest stuff! Thank you. I owe you a coffee.

To Missy, who has been with our kids more this past week than we have. Thank you, thank you, thank you. I still am adjusting to the excitement of living five minutes from you, how nice was it to switch kids the other day when our carpet was being cleaned? Or when I brought Charlotte over to nap because the handyman was putting a ceiling fan in her room. My kids are so lucky to have you, as are we.

To Kate and Bill....for doing more for us than I could even list. You have been with us through this entire process; helping us sell our house, viewing every potential house with us, moving out of our old house into storage, and now moving into this house. Throw in taking our dog for 6 weeks, providing us with a moving truck, painting rooms, the list goes on, and on, and on. Thank you, thank you, thank you.

To my parents, for letting the five of us invade your house for six weeks. We know that was not easy for you, and a total lifestyle adjustment. We don't know what we would have done (or where we would have gone!)  without you guys. Thanks for all the moving and unpacking help as well, the kid's toys have never been cleaner, Dad!! Mom, I owe you some cupboard cleaning one of these weekends.

To anyone I forgot or can't thank publicly....you know who you are, and we wouldn't be here without you. Thank you, thank you, thank you.

Once my life is organized a bit, I will be able to get back to regular blog entries! A Charlotte update is coming your way soon, as well some new pictures.

Happy weekend everyone!