Hendrick - Our little Angelman

Angelman Syndrome.

Two days ago that phrase wouldn't have meant a thing to me.  I had never heard of it before.  Wasn't even on my radar.  No idea until I got a text from Erin Tuesday evening.  Hendrick's neurologist had called her with his genetic testing results.  She told Erin "Hendrick's genetic difference is a UBE3A deletion on chromosome 15. Which causes a syndrome called Angelman Syndrome (AS)."  If you are like the rest of us and have no clue what that means, please visit this website for an explanation:

http://www.angelman.org/

The bottom line, its not good news.  There is the chance now that he may never talk or walk.  We all had a lot of hopes that once his seizure meds got regulated that he would get caught up to the other kids his age.  He had just started rolling over within the last couple weeks and things seemed to be moving in the right direction finally.  That one phone call just ripped the rug out from under us. 

Erin, Andy and Hendrick have a huge support group.  They have friends and family who love them to pieces and would do anything in the world for them.  They will all be able to handle this.   I just wish that they didn't have to. 

Erin is my oldest friend and I have known Andy since middle school.  I love Hendrick like he is family and this just breaks my heart.  Not because he won't be "normal".  None of us are normal, being normal is totally overrated.  But because he may not have the opportunity to live his life to the fullest.  I don't want him to have to miss out on things.  Erin shared her fears with me yesterday.  As a mother and a friend.... I just can't wrap my head around what she must be feeling.  Its so scary. 

I told her today, Hendrick is still the same little boy he was two days ago.  We loved him then and we love him now.  Nothing has changed.  We just have to readjust our plans moving forward.  We just have to look at the little goals and obstacles so that its less overwhelming. 

Its not the path they chose for their lives, but its the path they have been given.  I've always supported them and I will continue to do so.  I will work hard to make sure they get to enjoy life as much as the rest of us do.  I will work to raise awareness and hopefully someday a cure for AS. 

We are blessed to have Hendrick in our lives.  I know without a doubt that he will teach us lessons we would not know otherwise.  We will all be better people because of him. 

Some much needed family time

Saturday the three of us went to a winery by our house.  On the weekends they have live music and a lawn area where you can hang out.  It was just what we needed!  We all had a lot of fun!  And it was Lyla's first "concert" and she seemed to love it as much as Gary and I do, which is a very good thing!

 

Taking a Step Back

I’ve been slacking a little on the blog lately.  But I have my reasons, and I’m going to share them with you today. 

First let’s talk about my Weight Loss Wednesdays.  I’m not at all ashamed to say how proud I am of myself for the weight I have lost this year!  20 pounds is no small feat!   And I have done very well all summer staying in the zone I decided I am comfortable in (130 – 135 pounds).  I haven’t been getting in the steps daily that I really wanted to, but right now its just not a priority to me.  I have other things I need to focus my time on in my life right now, instead of being on a treadmill for an hour each day.  I haven’t been counting my calories for a couple of weeks now and things have stayed right where I want them to.  I think I have just sort of trained myself at this point what I can eat and what I can’t.  I still weigh myself every morning and if I don’t like what I see, I work harder that day.  So what I’m trying to get at is I really don’t see a reason to continue my Wednesday check ins right now.  There just isn’t anything to report!  If I start to struggle again I will most definitely document it.  Or if I can find the time to really get into the exercise routine that I want to, I will document that.  But right now, its pretty boring and just my daily life.

Anyone who knows me well knows that I’ve never been one to deal with life changes very well.  My senior year of high school I cried every single day because I knew my life was about to be turned upside down.  I’ve gotten slightly better at handling things since then, but deep down, I’m still me.  Less than two weeks from now Lyla is starting kindergarten.  My world is about to get rocked and I’m having a hard time accepting it.  I’m working VERY HARD at keeping a strong and excited attitude anytime that Lyla is around.  I want to her to be excited and to love kindergarten!  This is a big deal for her!  But Mommy is feeling it… and I know she is too.  Poor kid, she inherited more of my personality than I wish she had.

The changes are going to start next week when her and I are going to start our days an hour later.  This way when school starts she won’t already have put in 3 hours at daycare before getting on the bus.  So yes, I’m excited to get some extra sleep in the morning.  But coming to work an hour late means I will be staying an hour later.  Which means losing an hour out of my evening every day.  You know, my evenings that are already so jam-packed I don’t generally sit down from the time I get home until I put Lyla to bed. 

Then the next week she starts kindergarten.  AND soccer starts back up two nights a week.  AND she won’t be taking naps every day anymore.  Its going to be an adjustment.  I know that and I’m prepared.  Prepared – but also not looking forward to it. 

Lyla started daycare at 8 weeks old.  I am very accustom to not being with her every day all day.  And that has been fine.  I knew before we got pregnant that staying home was not an option and I was 100% ok with that.  Being a stay at home mom just isn’t something I am cut out for.  So for me, as a mom who has left her with strangers every day for the last five years…. Why is it so hard for me to have her heading off to kindergarten?  I’ve given it a lot of thought lately and I have come up with some reasons.  Since its Friday:

Five Things Friday – Reasons I wish Lyla wasn’t starting kindergarten:

1.      She isn’t going to be where I left her.  MAYBE if I could drive her to school and pick her up I would feel better.  I tried to figure out ways to make that happen and I came up totally blank.  There is no feasible way for me to do it.  So I will take her to daycare in the morning, like we always have.  Then I have to trust them to put her on a school bus.  A school bus driven by someone I DO NOT KNOW, who I then have to trust will drive her to the school.  The school where she will spend all day with more people I DO NOT KNOW.  Then I have to trust the strangers to get her back on the bus, trust the driver to drop her off at daycare, trust that daycare will pick her up…..   It’s a lot of trust to hand over to people.  I’m trusting them with the most important to thing to me in this whole entire world.   I’m terrified.

2.      Taking her to daycare every day is a lot different than her being enrolled at school.  Gary and I have always been the final word.  We have had the freedom to do as we please.  But when she is in school, we are more accountable.  You can’t just take that random day off when we all just need a break.  Maybe not this year, but soon, we will have to have time for homework every night.    We are going to have to give more thought to our weekend plans.  If she is exhausted from her week at school, I’m not going to make her run around all weekend. 

3.      This is just the beginning.  She is officially growing up.  This is the first major milestone.  Yes, it was so exciting when she started to walk and using the bathroom without assistance… but this is the first milestone she is going to do ON HER OWN.  It’s the first step of us having to learn to let go a little bit.  It’s the start of her not needing us as much.  And I’m so proud of her for growing up and I’m excited to see the person she grows into.  I’m happy to see her grow up…. but I’m also heartbroken at the same time.  When I think of how FAST 5 years have gone.  Before you know it we will be teaching her to drive and moving her into college.  I’m just not ready yet.

4.      I’m going to have to make new friends.  I always want to fit in.  And I want Lyla to make new friends and be able to have playdates and that means I’m going to have to befriend some moms.  Here is the thing though, I’m picky when it comes to friends.  And just because their child is awesome and they get along great with Lyla…. That doesn’t mean the mom is as cool.  Moms are an odd group.  And when you find the combo of cool kid plus cool mom – well you hold on to them for dear life!  Example – Amanda and Becca (and now Miss Angie).  We are one happy little group of girls when we are all together!  It works out spectacularly!  I’ve met the moms of some of Lyla’s other friends…. Well, you see who we have playdates with.   Fingers-crossed there are some cool moms in the new group!  And hopefully they think I’m cool too…  Its like dating all over again!

5.      Packing Lunches….   Yes, I’m glad I will be in more control of what she eats every day instead of the stuff (junk) they give her at daycare.  BUT that involves me trying to come up with something she will eat.  Or paying for school lunches.  Neither option sounds very appealing to me at the moment. 

So this is my life at the moment.  Trying to not gain back the 20 pounds I lost while I’m nervous and anxious about Lyla starting kindergarten and all of the changes happening in our world right now.  Its Friday, and we have a weekend with no plans.  I’m hoping to enjoy some family time the three of us.  Maybe we will just play and be silly all weekend.  I think that would be great! 

Idlewild 2015

It was a super hot - super fun day.  I'm too exhausted, but here are the pictures!  :)

10 Years as Mrs Burge

Once upon a time... long long ago... before Facebook background checks and text messaging... a boy and a girl didn't know the other existed.  They innocently enough went to a concert with their friends.  And the rest... the rest is history:

A year and a half later, they were engaged:

And 8 months after that they were married:

Its been 10 YEARS since that day!  

I knew the night we met that my life had changed. I tried to tell myself there is no way you feel so strongly about someone you just met... But there was no denying it. And it didn't take long for us to realize we both felt the same way, we were totally head over heels in love with each other!

It's hard to imagine what your future will be like, especially at 22 years old. If you had sat me down the day of my wedding & said "here, let me show you your life 10 years from now" I'm sure this isn't what I would have pictured. At that point I was still in the mindset of not ever having a kid. I worried more about where we were going out that weekend than what to put on a grocery list. But somewhere in the last ten years that all changed. I happily settled into the role of wife & mother. And Gary grew up too (even though he will deny it). He became a shining example of how a husband should be. He takes care of me while still allowing me to have my freedom. We have found a perfect balance of what works for us - and sometimes it's so grown up & mature that it's hard to believe!

When I try to imagine ten years from where we are now I don't know what to predict. Lyla will be 15 by then!  I wonder if we will still be in the same house?  Same jobs? One thing I do know for sure is we will be together. We make too good of a team for us not to be!

Things aren't always perfect. To be honest sometimes, not often, but sometimes things are pretty awful. Sometimes we fall out of sync and have to find our way back. But we always do. We never stop trying & I think that's what makes the difference. The fact that we want to be together. We make it a priority to always figure it out. 

I'm lucky to have Gary in my life. I've always been able to just be myself with him. I never have to explain myself or defend my feelings with him. He accepts me, even if he doesn't always agree with me.  I've never been so comfortable with anyone in my life.  Things have always been that way for us.  From day one I could just "be" with him.   

And we have so much fun together!  We spend more time laughing at the stupidest things that only we think are funny!  I love that we can be out somewhere and hear something or see something and just catch each others eye and try not to totally lose it.  Something that is perfectly normal to everyone else in the room will be some inside joke between us that only we find completely hilarious! 

We share the same views of the world.  And I think that is most important.  And we also share the belief of not pushing those views on other people.  But we always have each other to talk to about what we think of current events happening and we know that we will have each other's back if those views need any kind of defending.  Our views aren't always the most popular, but we stand united.  Us against the world.

We love going and doing things together.  Whether it be a concert, a movie, dinner, hanging out with friends, family time with Lyla...  Our calendar is always booked up.  And we love it!  We love to travel anytime we have the funds and vacation days to do so.  We are fortunate that we have been able to take a few trips to the beach, we went to Kansas City for a wedding, we've gone to Florida, Niagara Falls, simple weekends in Ohio and of course, last years trip to NYC!  Anything to just go and experience a new place.  We love to just go and explore!  I love the feeling of arriving somewhere with him that neither of us have ever been to before.  We have a blast trying to figure out where things are, where we should eat, how to get around, its my favorite thing to do together!  I am very hopeful that in the next 10 years we will get to take more trips to new places that neither of us have been to before.  Its special to experience those firsts together.  They are some of my fondest memories! 

I'm fully aware that I'm not the easiest person to live with.  I have a lot of trouble sharing things.  I like everything to be in the right place.  Everything has to be done a certain way.  But he puts up with my shit better than anyone!  And it doesn't go unnoticed.  I don't know that I could ever live with anyone else. 

 

 

We are not the same people we were 10 years ago.  It would be silly to pretend that we were.  We have grown and changed.  We were 22 and 25 years old when we got married.  We were so young!  Luckily as we matured, we have done it together.  Yes, there have been some growing pains through the years, but we have come out of it much stronger.  We are a more solid couple today than we have ever been.  I love the man that Gary has become.  I love watching him be a father to Lyla.  I love the way he looks at me.  I love laughing with him.  I love crying on his shoulder when the world is just too hard.  I love that he is the one I chose to spend my life with.  Happy Anniversary to my best friend, my partner, my lover, MY HUSBAND!  

 

WLW - Week #29

Starting Weight:  155 lbs
Today’s Weight:  132.8 lbs
Total Loss:  22.2 lbs

WLW - Week #28

Starting Weight:  155 lbs
Today’s Weight:  133 lbs
Total Loss:  22 lbs

I met my goal last week of doing 8500 steps every day.   So far this week I have done at least 9,000 steps every day.  I'm trying to just keep increasing it until 10,000 steps is a normal day for me.