Wednesday, May 1, 2013

Two PLUS Years

Well, here it is over two years since I last wrote. So much has happened. Genevieve is now 4 years old. She is happy. Healthy. Smart. Funny. Crazy. Beautiful. Spunky. And so much more. She has shown so much strength over the years, and I am very blessed to be her mommy. As I continue to write (which I hope to do often again), I will get everyone caught up on our crazy life over all this missing time. I promise :)

Today is May 1st, 2013. It is the beginning of Ichthyosis Awareness Month 2013. I am doing a "31 Days of Ichthyosis with a new picture or fact every day.

So here is the first one:

Every year, more than 16,000 babies are born with a form of Ichthyosis. It is usually present at birth, or within the first year of life and affects the patient throughout their lifetime.

I remember February 8th, 2009, like it was yesterday. I was so nervous and scared to become a mom. I never knew my whole world would be turned upside at the same time. Doctors told us to prepare ourselves that we most likely would not be bringing her home from the hospital at all. And to prepare services. How could a doctor tell us that? I had a seemingly normal pregnancy. They didn't even know what was wrong with her, yet. My heart was broken. Anxiety was sky high. I was no longer scared, but absolutely terrified. I couldn't touch my baby, let alone hold her or try to feed her. All we could do was look at her and talk to her. And we did exactly that, every chance we had. I remember she would open her eyes every time I spoke. She knew her Mama was there with her. There was no way I was going to give up on her. I knew she was strong... afterall, she was my child.

Friday, November 12, 2010

The Holidays

Well Hello. It's been a while. Genevieve is doing very very well. She is all over the place, finally comfortable walking and climbing and getting into well, everything! We moved into a house not long after my last post, and it is amazing how much everyones attitudes have changed... mainly Genevieve and Kingston (our chihuahua). Everyone is alot happier with the extra space, and of course Kingston LOVES the yard.

Genevieve had fun on halloween. She was a little "dragonfly" (according to Old Navy). She enjoyed raiding Grandma Jody's smarties bowl. And playing with Grandpa. We didn't go trick or treating, just visited with a handful of family members. She was so proud of her wings and wand, and anytime she heard music she would dance.

Cant forget that we carved pumpkins too. I cleaned out the guts and Genevieve would stuff them back in the pumpkin!!! Little stinker. I cut some simple stars out of her pumpkin and then let her finger paint the pumpkin. And with exactly my luck we got a TON of rain the next few days and all the paint was washed off. It was a great memory though for us.

We also got to see our Colorado EHK friends in October again. They came for a followup at the Mayo Clinic. Words cannot even begin to express how much that family means to me. Without Jenny, I feel I'd be lost. We are in this EHK battle together with different children. Jeremiah is 2 months younger and much more severe than Genevieve, but I love that we can still understand and know what one another are going through. I know I always have a friend to listen and understand. They are not just friends, they are definitely family to us.

Jeremiah and Genevieve October 2010

and I'll leave you with a cute picture of Genevieve and her baby stroller.

Monday, September 13, 2010

This is my life

This is my life. This is my world. I would give up everything for this little girl. Nothing else matters when she is with me. This is why I choose to stay home on weekends than go out. I want to spend my time with her. I want see her grow up. Do I get time away from her, some "me" time. Of course I do. I do enjoy my time away as well. In fact, I have a 4 day vacation booked for a weekend soon, out of state... and she will be home with Andy. And I am VERY excited for vacation. But this little girl is my life. I know it sounds cliche, but my life changed the day she was born. It was no longer about me. It was all about her. My life was no longer about what was best for me.. it went to all her. I spend each day watching her grow up, helping her learn new things, teaching her new things, and finding new ways to educate others on her skin disease. She was given to us for a reason. I have always been great with getting the word out to others about things. I have always been one to write. I have always been one to educate. So that is what I do. I research at least once a day new things about EHK and Ichthyosis... and I pass those things on to the other families we know. I take those new things in and find a way to put it into our daily routine with Genevieve. I also take advantage of my education currently for early childhood education with a specialization in special needs children. I didn't just start this degree for a career later, I started it so I can help assist her educators when she starts school about the best ways to approach her education with her special needs. To help other children with their special needs as well. She is my life. She is my everything. And no matter who you are, she will come before you in my life.

As for other areas of my life, being that I keep getting questions. Are Andy and I together? Right now, no. We haven't been since about June. To people in our lives, we might as well be together. We are happy for the first time in a long time. We are taking a break, and focusing on ourselves (as selfish as that sounds), to become better partners for one another and better parents to Genevieve. We both know we want to be together, but over the last 2 years or so, we both have become people that neither of us are very proud of (towards one another). Part of this process is opening up to one another's families and friends. More so part of my process. In his life, there have been a lot of people who have not supported our relationship throughout our problems. It's been a lot of "leave her" type stuff. We've been together 3 and a half years and I've never felt accepted by his family. Not that I need to be a part of his family, but after this long, you'd think it would be a comfortable environment for me, and it's usually the farthest thing from. But I'm doing better. Stepping out of my shell, and trying to not think about recent events involving me and his family in the last 2 years. Situations that I have only talked to Andy and Alicia about. Are Andy and I still living together? Of course. We are not saying this is the end of our relationship. In fact, we both know that we want to be together, but we both have things to repair within ourselves first. We still are the same way towards one another, in the positive ways. Still affectionate. Still goofy and crazy in love with one another. But since starting to repair ourselves, there has been no arguing and more conversation. And also more consideration towards one another. So this is a good thing... no scratch that... this is a great thing. We are a family. We want to continue to be a family, together. And we are heading in the right direction for once.

As I mentioned I am headed on vacation soon. Just me and my best friend, no kids. 4 days of sun and beach. I will take advantage of the time to relax. Alicia has lived in Virginia for the last 3 years and just moved back to MN after graduating college. She has a beautiful 3 and a half year old daughter, and could also use a kid free vacation. And after living in different states for 3 years, we could use some best friend time together.

On an even bigger note, we (yes, me, andy and Viv) are moving. We have decided to terminate our lease and move into a rental house. It is much larger than our apartment, and has a huge yard and shop for andy to do work in. The best part, rent is cheaper than our apartment. That is why the decision was made. We can have more space for less a month. More space is a good thing for mine and andys relationship (as we kind of step on eachother's feet in the apt), good thing for Genevieve to have more room to run and play, and a good thing for little Kingston, who will have a yard again to run and play in. As of right now we do not know the exact move in date, as they are doing renovations to the house, but it will be sometime in October. We have to be out of our apt by Halloween.