Fighting Texas Aggie Class of 2034

It is hard to imagine our little girl even being here to hold let alone one day dropping her off at her dorm room at Texas A&M. I am only going to allow myself to think that far in advance this one time because to fathom the emotions that I will actually experience seems to be impossible and overwhelming in the best way!

This weekend Jorde and I joined our friends down in College Station for alumni weekend. One thing is for sure, that town is sure different when you are pregnant! I held my own though, turning in at an impressive 11:00 PM. We left our house in Dallas at 8:00AM and arrived in Aggieland for a day full of events and Aggie Football starting at 11:45AM. The trip down there was different than trips past. Before, the trips were focused on how much fun we were going to have and what bars we were going to go to after the game. This time down the guys were planning that stuff but I was remembering my experiences and thinking about just how different our life is.. How much God has blessed us in the 4 short years I have been away. Everything in my life has a new meaning and I guess going to College Station is no different.

Like I said, imagining Jorde and I 18 years from now taking Sloan to college is a hard reality to swallow. I am just now coming to the realization that she is going to give me a dose of my own medicine starting around age 10. How am I ever going to give my baby girl over to the world and trust that it treats her well?

I'll tell you how. We are going to brainwash her into believing that any other school but Texas A&M is unfit and take a little piece of mind with us knowing that, while we can't protect her from the decisions that she will make on her way to becoming the person she wants to be, we can put her in a town and around people that treated Jorde and I so well just 4 and 6 years ago. We truly believe that Texas A&M is so much more than an education.

The drive down to college station was a lot of reminiscing for me. Jorde's two fraternity brothers joined us on our road trip so I was allowed to concentrate on the reflections of my trips back and forth during my time in College Station while they talked fantasy football (gag.) My first trip home to Amarillo my freshman year was Thanksgiving. The last time I saw my parents was the weekend they dropped me off for college in August. I couldn't wait to get home and let them see just how grown up I had become in just three months. I had already met Jorde and determined that he was the one for me but I was too "mature" to tell anybody I had a HUGE crush on a Sr. Computer Science Major for Colleyville Texas. No no, the grown up JJ would casually mention that I met a boy that seemed nice but that I wasn't going to let him get in the way of my academics and we will just see what happens (I know! I laugh just typing out my "very mature" thought.) The truth is, it didn't take me one hour before I was singing his praises to my cousin, mom, sister, grandmother, and aunts!! While I hope Sloan is as lucky as I was to meet the man of my dreams the first week of college, I would be absolutely fine (and probably breathe a sigh of relief) with her joining a sorority or an organization that allows her to make everlasting friendships and boys coming later ;)

Speaking of boys! ...Our friends Julie and Brett Crowell welcomed their son Jackson Cooper Crowell to the world on September 16th (my birthday) and we are pretty sure that Sloan and Jackson might be one another's first love. If anything they will be the best of friends! I am so happy for Julie and Brett on their beautiful, healthy baby boy!

Here he and I are getting to know one another.

When we got to College Station we stopped in at AggieLand Outfitters to pick up some Aggie gear and couldn't resist some Aggie Loot for Sloan! The more maroon the better!!

We are full seventeen weeks in and Sloan is growing by the hour. I haven't felt her kick or a "flutter" just yet but I know it is soon to come. She has me captivated! Every thought I have is someway connected to her. I try my very hardest to not talk about her all the time (one of the reasons I started this blog) but she just amazes me! She amazes me because she is our daughter! The man I love more than life itself and I made this amazing little person that will be a perfect mix of him and me. It overwhelms me to think of the places she will go, the girls she will call her best friends, and the people she will influence.

Here I am going into my 18th week.

65 Roses

You know how little kids say the darndest thing? well, here is the story of 65 Roses.

"65 Roses" is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.


Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.

After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.
He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."

Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.
~~

There are so many amazing fundraisers that can help Mary and every other parent, spouse, and patient find a cure for CF. One of which my amazing brother-in-law will be participating in. The CF foundation is 100% donor funded so without donations the scientists can not do what they need to do to save our little girl. Your 10 dollars puts us exactly 10 dollars closer to the cure. Will you please sponsor my brother in law as he climbs 70 flights of stairs to help raise money, raise awareness, and ultimately find a cure for his niece and cousin? Please copy and paste the link below into your brower, read his story, and donate a buck or two in Sloan's name :)

http://www.cff.org/LWC/dsp_donationPage.cfm?idEvent=16413&idUser=215739

The Weiss Brothers

The house we are going to bring our babies home to

I love the fact that I was raised in the same house my parents live in today. It is just so cool to go home, sit in my old room and remember all the fun things that we used to do as kids. I can't wait to take our babies back home and tell them about my childhood... Dressing my brother up as a girl, making my sister play in the closet (ok, those make me sound pretty bad but I swear they still love me) playing house and daydreaming about what it would be like to have a family of my own one day. Also, my dad made the best blanket tents!

Jorde and I drove by the house he grew up in one day after leaving six flags and decided it wouldn't hurt to knock on the door and see if we could walk around. That was really neat for him to tell me about his childhood there. He showed me where his dad strung fishing line from one end of the living room to the other and they would play GI Joes for hours, jumping over the sofa's to rescue their brother from the "tickle monster" and tossing their dog from the porch yelling "fly puppy fly" (I can't make this stuff up people!)

It seems that memories are brought back to life when you go back to where you made them. It is also funny how much bigger everything seems when you are smaller. I swear my bedroom shrunk!

Well, as you might have imagined my pretend "playing house" has become a reality and Jorde and I started the long process of finding our perfect home to raise our children in. We looked at more than 50 houses easy! It was a true search for the perfect childhood memory making home. I am happy to report that we found it!

This house is perfect for us! It is a 4/4 with a guest house for my parents to come stay with us for an extended period of time if needed. The downstairs is one huge room that is great for entertaining and watching after young kiddos. This house couldn't be more perfect for us. We even have a pediatrician across the street from us! I am so very excited to bring Sloan home to our new house that seems to have been made perfectly for us.

I wanted to share a few pictures of it with you all. We will be moving in on November 11th.

Hope through Heartbreak

There is something that I have been holding back. I don't know if I am writing for complete strangers, family, friends, or friends of friends and family. I am blind to my audience but that is ok. I hope this post will call whomever reads it to research and ask questions about what I am about to write about.

Since finding out I was pregnant (at 4 weeks) anybody who asked what I was hoping to have got the answer “10 fingers, 10 toes, and a healthy baby.” I didn’t think that was too much to ask for. Everyone around me seems to be getting that with their babies… Why would we be any different?


Let me start at the beginning: a little over a week before we conceived (not planned remember) I asked my doctor to go ahead and test me for Cystic Fibrosis since Jorde has a cousin with this vary rare disease. She casually said “girl, that is such a rare mutation, we will worry about that once you are pregnant.” and I left it at that… 5 weeks later we find out we are pregnant. It was an exciting time but we both felt the underlying weight of not knowing. At the same time, my family had never had anything medically wrong with us, not ever! What were the odds? Well, 1 in 25 actually, were my odds and everyone else who has never had CF affect their family. Jorde’s odds were 1 in 8.

At 10 weeks we found out I am a carrier of Cystic Fibrosis. Since then it has been a waiting game. We didn't want to scare our friends and family so we tried to continue life as normal and made the most of the exciting moments we had. Announced our pregnancy on Facebook, we shared the baby’s sex with our family and close friends, created a blog, and posted sonogram pictures on Facebook. Afterall, this is an exciting time and neither of us were going to let worries get in the way of us celebrating the life of our baby girl!

After 5 weeks and a pretty intense test (cvs test) we found out that our precious little girl will be born with a genetic disease called Cystic Fibrosis. For those that find this blog due to a "cystic fibrosis" search, she has the double delta f508 mutation. This is the most common of all the mutations.

Cystic Fibrosis is presented in a person if both parents carry and pass the rare recessive gene... After we found out that we were both carriers the odds for Sloan to actually have CF was 1 in 4.

We found out in our 14th week that she was indeed going to have Cystic Fibrosis. It seemed like the longest waiting game of our life but in reality it was 4 weeks... 4 weeks and our lives were turned upside down. We have experienced a heartbreak that we have never known. We hurt for our unborn child. There are so many questions that we have that can’t be answered until she gets here and shows us just how strong she is.

In the Week since we found out we have met with a genetics counselor, the Head of the CF department at Children’s in Dallas, dropped my current obgyn, and made researching our new hobby. We are very optimistic for our little girl. There is no doubt that she will have the best medical attention and our entire family has jumped right in to learn how to care for her right along with us so that we don’t feel so alone and can trust that when Sloan is with them she will get the same care as she would if she were with us.

At first my thoughts were centered around what she wouldn’t be able to do.. she wouldn’t get to play with her cousins, she wouldn’t get to go to the lake, can’t go to the movies, can’t play on the playground, what about the pools? Can she go to a public pool? My list went on and on. My whole life I dreamt about what my child would be like, what would her childhood be like? It seemed like she was not going to get a chance to be a child.

As Jorde and I got used to the idea that it was a potential she could have CF we slowly stopped worrying about her and feeling sorry for ourselves and the situation we were in and started researching. The more research we did the more inspired we were! There are some amazing advancements they are making and Sloan will benefit from them. It looks like a cure is in sight!

What we want for her is what every parent wants for their child. We want her to be confident in who she is. So what if her daily routine is a little different than the kids she grows up around. We want her to care more for others than for herself. She will have bad days and hospital stays are going to be a part of our future but she is still a very blessed little girl and there are a lot of people out there that are less fortunate than she will be. We want her to play sports! Actually, it is almost required for a CF patient to work out their lungs. Swimming, soccer, basketball, running, snowboarding, wakeboarding, PLAYING.. All really good things that she will be great at!

Again, I don’t know who this particular entry will touch but I urge you to ask us questions. I realized I said nothing about what CF actually does to a person. If you know me call or text, if you don’t know me I would love to get to know you. Please message me or make a comment and I will answer any questions I can. If I don’t know I am excited to research it so I will know next time.

We will be huge advocates for our daughter and for the CF community. There is no time for self pity or thinking “what could have been.” The time is now and we are excited for what the future holds!