Friday, February 17, 2017

Lucy's Story

It’s hard to know what to say or where to start when telling a “Life story”. It’s in part my story, our family’s story, and of course Lucy’s story. With so many branches it can be hard to see the whole tree at once. So I figured I’ll try to start at “the beginning” and see where it leads me from there.


I was 20 weeks pregnant. I was deathly sick, my “morning sickness” was a joyful 9 month flu. But we were headed in for our first ultrasound and could not wait to find out the gender of our sweet baby. When our Tech told us it was girl it was all I could do to not scream out with Joy. I had desperately wanted it to be a girl, I had felt that it would be a girl.The ultrasound kept going, very quietly now, at first I didn’t realize the silence but soon I felt it. Something was wrong.

The weeks and months that followed were hard. Some days I cried, other days I tried not to think about it. And there where those joyful days when I knew everything would be alright. The rest of my pregnancy consisted of test and ultrasounds, more ultrasounds, consultations, and more ultrasounds…. We never really had an answer so they just kept watching. At 38 weeks I was starting to have massive water retention, swelling and showing signs of preeclampsia. It was also determined that an induced/planned labor would be best so we could have Specialist on hand ready to help our baby girl.

During labor Lucy’s heart rate started dropping, she was quickly delivered by forceps and out came a super chubby beautiful baby with so much dark hair. But I remember she looked so purple to me, I was so confused. My doctor held her up for me to briefly see her then she whisked away. She wasn’t breathing correctly, her chest was con-caving, and she was soon followed by a team of Doctors and my husband to the NICU.

She was put on a CPAP machine to help her lungs expand and insure proper breathing. More testing was done. We would be told many different things over the next two weeks while she was in the hospital, but came out with no real answers. It would be 6-9 months later before we are able to see a geneticist and get real answers. 


To put it in understandable words, Lucy has a duplication and a deletion on her 11th chromosome. We were told that there are only a handful of documented cases like Lucy’s, all of them more severe. She was given the diagnosis of Beckwith Wiedemann Syndrome. She shows some of the characteristics but not all--her high birth weight, large tongue, larger internal organs (which can lead to cancer and gets checked multiple times a year) and extremely low muscle tone.


As Lucy has grown and developed she has become a sweet, healthy child. We had very limited information on what she would be like when she grew up so for the first few years we didn’t really talk much about her disability. We were worried about putting this sign over her head when for all we knew she could be “normal” in a few years. I worried and cried about how she was different, and how others would see her. I wanted her to feel included and accepted, to have fun and be loved.
 Lucy develops at a lot slower pace; at 16 months she began to crawl, at 3 years she started walking. Tears of joy ran down our face as our sweet baby girl took her first steps, she was laughing and giggling with uncontrollable joy as we cheered her on. We were so excited that we didn’t even notice her strange walk at first, hahaha! She didn’t really bend her knees and walked with two stiff legs out to the side. We soon got her fitted for braces on her ankles and legs that helped over the next year and a half. We now laugh when we see those videos of her early walking years and her stiff gait.



We can probably tell you more than you would ever want to know about early intervention programs and IEPs… something most people probably have never heard of. We have been to countless therapy sessions and meetings. I cried and cried the first time I put her on a bus and sent her off to preschool. She had just turned 3 and couldn’t get home services anymore. She seemed so little, and I felt I was sending my sweet little girl off into the strange world with no one to protect her… She loved it, ha! And as I delivered our second baby two weeks later this turned out to be such a blessing! She has such a fun attitude about everything and loves to go out and explore. She loves socializing and loves to laugh with others.



Lucy is now 6 and she test at a 2-3 year level and has limited speech but knows quite a bit of sign language. In just the last few months her speech has increased drastically and she is showing greater interest in using that to communicate. We have so much hope for her and know we need to wait and be patient and work at a Lucy Speed J.


I feel like I have barely touched the surface but I am not sure where to go next, ha! There is so much more I could tell you about Lucy, the experiences we have, and the way our family is different. But I think this is a great “introduction” for those of you who have had questions about our sweet Lucy. Being a parent to a child with disabilities is so hard, so emotional, yet so sweet. I am extremely blessed to have such a sweet girl, to be taught patience and never ending love by her. Every day is a new adventure. I do not know what the future holds for her, for us. But I do know that Lucy is so happy! She is so loved! And that is all I want, all I dream and pray for.

I hope this helps you to see and understand our sweet girl, to love her for her differences. Please comment below with any questions you have and I would love to answer them in future post!


Thursday, February 25, 2016

Selling our first Home

I still cant believe that we are moving! This home has been so perfect and I thought I would never leave it :) Its hard to  leave something after putting so much work into it, but we are excited to put our touch on a new home and make it ours :)
Here are a few pictures that our Realtor took of our home, I thought it would be fun to share a quick walk through!





















Im going to miss so many things about this home, but most of all is this amazing view! With a walking path right behind us and the river where we enjoyed spending time on our paddle board and kayak.
.....On to new adventures, right?!?!? :) 

Tuesday, June 16, 2015

Baby #3

We are so excited that Baby #3 is on the way! Due this Thanksgiving, and its a BOY!!!!!



Thursday, November 13, 2014

Holiday Giveaway!

Today we are having our first snow! And seeing that we are also halfway through November I say it is time for Christmas!! :) If you follow me on Facebook you may have seen the Natural Ornaments I have been working on, and yes a tutorial is coming soon! But First, why not do a giveaway?!!


The winner of this giveaway will win a set of my natural ornaments--either chalkboard or Christmas silhouettes. Each set has 6 ornaments in it.
To enter:
  1. Follow me on Facebook
  2. Follow me on Instagram
  3. On my Holiday Giveaway Post on Instagram comment what set you would like to have--either the chalkboard version or the silhouettes!
  4. For extra entries, tag as many friends as you would like on my Holiday Giveaway post on Instagram--one friend per comment please! 
That's it! The giveaway is open until Midnight on Sunday (Nov 16th). Shipping in US only.
 
Good Luck!





Wednesday, November 12, 2014

Our Favorite Homemade Biscuits

I finally made the perfect biscuits. Biscuits that are so good and easy that I made them twice this week already!



My hubby lived in the South for two years, after he came back you could say he was kind of a biscuit snob...which made it super intimidating for me! ;) After a few failed attempts I gave up and we have just been buying our biscuits. Until now.

This recipe really is super easy...I whipped up a batch for breakfast this morning in about 10 minutes.

Homemade Biscuits:

1.5 cups flour
3 Tbsp sugar
1/2 tsp salt
3 tsp baking powder
1/2 tsp cream of tartar
6 Tbsp COLD butter/margarine
1 egg
1/2 cup milk

Directions:

Preheat oven to 450 degrees.
Combine dry ingredients and use a pastry cutter to cut the butter in.
..For some reason I still don't have a pastry cutter...this masher works perfectly! ;) 

You should see small, pea-sized pieces of butter throughout the dough. Add the milk and egg; mix until ingredients are combined.


Sprinkle flour on top of dough and on a clean surface. Knead the dough 10-15 times with your hands. You can add more flour if super sticky. Pat the dough out to 3/4-1 inch thickness and cut with a biscuit cutter (or in my case a glass cup).


After cutting, pat out extra dough and cut again! I get about 8-10 biscuits from this recipe.

..thickness of my dough

Place biscuits on lightly greased baking pan and bake 8-12 minutes (10 min is perfect for me, but start low the first time). The bottoms of the biscuits should be a beautiful golden brown and you should see the tops starting to turn a little brown.


These taste even better with homemade freezer jam. I'll post an easy recipe for that soon. Enjoy!!



Friday, October 31, 2014

Happy Halloween!!

This month went by way too fast!! So instead of doing any of the tutorials I was planning on I am just going to highlight some fun Halloween crafts...

Dead Tree silhouette: I bought large sheets of paper from the dollar store, projected a tree onto it, trace and cut! Simple.



 Witch Legs: Super easy! I found this tutorial of Pinterest showing how you can cast yourself with tape! I then bought the tights from Walmart and shoes from Target.


Skeleton Cookies: This was such a fun project! I decided to try out "flooding" as a way to frost cookies...smoother look and great for decorating. You can know all that I do on it by reading this tutorial! :)  I used the Swig copycat sugar cookie recipe from Vintage Revivals and it was fantastic! 


Made for cute treats for the neighbors! 


If you want to see how to decorate your house for Halloween and still make it look gorgeous check out my friends house!!! .......Give you ideas for what to buy on clearance this year! ;)


And Last but certainly not least..here is a throwback to last year when my daughter was the cutest old Lady ever!!!!  :)







Happy Halloween!!! 


Wednesday, October 15, 2014

Be A Mom

Today I made my bed.

I am not one to blog about "personal" things--I'm not a motivational speaker nor do I have this infinite pool of wisdom for how to have the perfect life. Actually, most days I feel like I am failing in most areas of my life. And today it finally dawned on me that I was..and why. I haven't been making my bed.

You are probably thinking right now that I am crazy and I am going to lecture on house cleaning. Nope. I just wrote in my journal (first time in awhile..)and this is what is says:

Get Up.
Make your bed.
And be a Mom.

That is all that I needed to do today.

Its late at night. I am typing as I listen to my girls sleep. Tomorrow I will probably be embarrassed that I published such a post as this. But tonight, I know I need it. And I guess I am just wondering if someone else needs it as well.

I am "failing" because I am trying to do to much. And when we take on too much we are not able to give our all in any areas. In this media filled world we live in I often feel like I SHOULD have it all and do it all. And as I am trying to be super women I am forgetting and missing out on the most important role that I have. So today I tried to simplify my life.

Put down the phone--turn off those Facebook notifications so you are not tempted to look at it every minute of the day. Get down and play with your kids. Your day will not be perfect. I still had frustrations. But I also didn't feel like I was failing. I set two goals for myself--make the bed and play with my girls. And I succeeded. I achieved ALL.




Start Small. Today I made my bed and it made all the difference. I encourage you to "make your bed" as well.

I made a Printable to help me remember to simplify my life. And I thought I might as well share it with you! :)

 Download PDF here.
Download PDF here.