Wednesday, October 24, 2012

Best Movie Everrrrrrrrrrr- "Remembering Baby Micah"

This is my ALL time favorite movie everrrrrrrrrrr!  We hope you like it and enjoy watching it as much as we do.  Of course, the first 10 times we watched it we bawled our eyes out but in a weird way we liked it.  Sometimes the best part of my days are when I cry uncontrollably, it is such a healthy release {can't explain the feeling}.  I feel like it's my way of communicating with Micah.  The weirdest thing is that I have NO THOUGHTS while I am crying, it's just a PURE genuine sadness. No "I miss her, I want her back, why did this happen" NOPE none of those thoughts cross my mind.  I just CRY!  Sounds awful, I know but it's where I am at right now and I don't mind it. It makes me feel closer to her and some of the videos in this little movie are what make me happy.  I love feeling like she is right in front of me.  I sometimes forget that some of you have never seen her in action. I wasn't big on posting videos because I was worried about her looking too sick but now I LOVE these videos and I embrace them!  She is our little girl and we are so proud of her. 

 I owe a HUGE thank you to Nick Marmarou for making this video for us.  You have become a great friend and I will help you and your wife with whatever decorating that needs to be done in your home! I am all yours! It's the least I could do for you.  

Grab some tissues.... {this first song is the song that I mentioned in an older post about how it always comes on when I sit down to blog- it will forever remind me of Micah "She's all we ever WANTED"}

We heart Micah

Saturday, October 13, 2012


As you all know we did not get any answers before Micah passed about what type of disease she had or where she got it from, which is INCREDIBLY frustrating. We knew that her muscles weren't progressing the way they should have so it wasn't a surprise to find out that she had an undiagnosed muscle myopathy(disease).  Before she passed, our Neurology team sent out 3 more genetic tests and those tests will probably take a couple weeks/months before we will get the results back.  We are so on edge about this.  We have no idea if what she had was inherited from us. MAJOR SAD FACE!  The thought that there is a possibility that this could happen again is devastating.  We have talked about us having another baby but we are both very very hesitant and of course we won't make any decisions until we get these tests back. We want Micah to have a brother or sister so that she can look down on them and be the most amazing big sister.  She deserves that! I need to post a pic of her because I miss seeing her face.....

I have had this post typed and ready to be published for 2 weeks now but I was just uneasy about posting it and I finally got the courage to hit publish. Yay for me right?  Well, there is so much I didn't say and I'm sure you know why.  It's such a terrifying feeling to think that maybe one day you might never be able to get pregnant again or maybe you were the one who caused Micah's disease or living with the unknown and then how awful would it be to have this happen again?   This is it, this is where everything gets REAL! Ughhhhhhh...........

Yes it's getting real and it's REALLY FREAKING AWESOME to receive a phone call a couple days ago from our genetic counselor (who I think is one of the smartest women I have ever met) who told us that they are 95% sure they have determined what Micah had.  WEIGHT lifted immediately.......AHHHHHH! I am jumping up and down over here.  This is the first time I have genuinely smiled on the inside since....well.... since a really long time. She also informed us that there is a chance Micah's myopathy was a spontaneous mutation of the ACTA1 gene.  Translation: it is very likely that this was not inherited which means it might not be possible that Bill and I are carriers of this mutated gene. HECK YEA!!!  I wish we could express our excitement into words but it is IMPOSSIBLE!  I guess you could compare it to winning the lottery. SERIOUSLY, this might be better than winning the lottery. You can't buy love right?  Again, 95% sure so we are still awaiting confirmation but she sounded very confident that this is just a fluke mutation of a gene.

So you are probably saying, "well what the heck did she have?" Micah had something called Nemaline Myopathy and this disease could have been cause by 6 different mutated genes.   In Micah's case the gene that caused her myopathy was the ACTA1 and in past findings they discovered that parents are not carriers for this occcurance. It is like a FREAK mutation and there was a 1 in 50,000 chance of this happening to any baby....WTF? WHY her?  We found out there was a baby born in 2003 that passed away at 2 mos from the same nemaline myopathy and he or she had the same exact mutated gene(ACTA1).  Their findings show that those two parents were not carriers either .... THANK GOD for their sake!  I would LOVE to meet them.  There is so much I am not explaining but it's really confusing so sorry if you don't understand.

We are so very happy and excited for our future now!  Still holding onto the fact that the genetic counselor is only 95% sure that this is what caused Micah's condition.  She will confirm when the other two genetic tests come back.  Who knows when that will be?!?!  Staying Positive!

Happy Birthday to our 3 month old Angel in Heaven! 
We Heart You Micah! 

Saturday, October 6, 2012

Signs from our Micah girl

When I think about Micah communicating with us it gives me the warmest feeling inside.  It's a feeling that I never want to go away.  There have been a bunch of different occasions that I am going to share with you guys. Starting with my favorite....

1. My dad had a hip replacement 3 days after Micah's funeral and even though being in a hospital was the last place we wanted to be it was a no brainer that we would go spend some time with him.  On our way home one day we were approaching the Betsy Ross Bridge and the weather had been crazy all day with tons of rain. So we're driving along and I look to left as I am driving on the bridge and it's so foggy out that I can't even see the water below us.  To the right of the bridge was even more dark sky that had just passed us.  We get to the middle of the bridge and we see this MASSIVE rainbow. I'm talking HUGE and its SOOOOOOOO bright.  Keep in mind seconds before you couldn't see a damn thing to the left and now we see this intensely bright rainbow.  It was so bright that we could actually see where the rainbow started.  Meaning it lit up the tops of the trees on the NJ side of the bridge and it looked like it was coming out of the trees.  It was almost as if we were in the eye of a storm because as soon as we got off the bridge we couldn't see it anymore. Seriously, it was nowhere to be found and there was absolutely NO sun anywhere.  I remember Bill saying "I've been alive for 55 yrs and I have never seen where a rainbow touches the ground."  We knew immediately it was Micah beaming down through those stormy clouds to say "Hi Mom and Dad, I'm okay and hanging out with this guy they call Jesus." CHILLS!

2. The next sign is Micah's way of communicating with her cousins. My nephew Tommy got a super cool remote control police car that he likes to press one button that makes this car spin in circles  He seriously doesn't drive it anywhere he just lets it circle in one place.  So I get a call one day from Holly and she says, "Micah is messing with all of us" and I was like what do you mean and then she said that the police car would turn and start circling out of nowhere.  They all were smiling saying "It's Micah!"

3. Bill and I were sitting on the beach the day we were planning on spreading some of Micah's ashes and we were asking Micah for a sign or I should say Bill was asking for a sign and I was like, "Ummmm you're crazy it doesn't work like that, we have to wait for her.  She won't do it on call." And of course we BOTH stared at the seagulls, the water, the clouds in search for this sign and it was what I expected.... NOTHING!  So we ended up going on with our day/night and it was a beautiful little ceremony we had.  The next morning we wake up, I'm sitting at the table sorting through all of those amazing photos that Becky took and Bill is hanging on the couch watching the tube.  He, like he ALWAYS does, was going through the pics of Micah on his phone reminiscing about all of the fun times and then he comes across this picture below.  He took it a couple minutes after we were talking about Micah sending us a sign on the beach. Prior to us talking about that I had taken a photo with my phone and posted it on facebook and there was nothing exciting in my pic other than the tops of my!

So he immediately sees this photo and was like "Shush, check this out. Do you think it's Micah?" and I immediately got chills once again.

 I noticed how bright it was up near the sky and it was beaming down right where we had planned on spreading her ashes.  We did it at a specific spot so we always know where to sit the next time we are there.  It was so Micah saying, "Mom you are wrong and Dad is right.  I can send signs whenever you want."  LOVE HER

4. I have the same routine every time I sit down to blog.  I park it on my awesome sectional, grab my laptop from my desk behind my sofa and I put on channel 429 on our TV(Today's Country) and I go to town.  Almost every time I turn the TV on and begin to write the same song comes on, and it did today when I started writing this post.  This has happened at least 5 times and it's not just any song it's a song we heard driving to the hospital every day this summer.  Not only is it a familiar song but every time it would come on in the car I would say, "yay it's Micah's song." I am not going to share the song because you will soon hear it on here in an upcoming post.  I would sometimes just bawl in my car signing this song.  The words totally apply to something so different from our situation but Love is Love and I loved relating the words to me taking care of my Micah Girl.  

5. My friend Alicia's daughter was doing her homework about 2 weeks ago and one of her problems looked like this:

Her daughter actually said " Look mom, just like baby Micah." Yup Micah is totally making me smile all the time. Thanks for sending this Alic!!!

6. The most recent sign was just yesterday. I of course was painting at Holly's house and I was in her upstairs foyer and I thought I heard a car door so I went into their master bedroom to look out the front window.  I wanted to make sure if Tom was home with kids that they knew they couldn't come upstairs.  I looked and no one was there but as I walked by their bed, Eva's old crib soother started playing music.  I guess Eva brought it into their room and was playing with it earlier that morning.  I had to go over and turn it off and it scared the bejesus out of me.  It sounded like the same tune that Micah's soother played while she was at CHOP.  I'm sure they all have the same music but I felt like it was her there with me.  It was a good day after that happened. No matter how far away she is I know she is with me wherever I go.

We heart you Micah Girl!

Wednesday, October 3, 2012

Keeping Busy

Sooooooo.....we all know I LOVE to paint and I LOVE to decorate/organize.  Painting is so incredibly soothing to me.  I can pop open a can of paint, throw some pandora on and go to town.  I have found that painting has been a huge help for me in this RIDICULOUSLY challenging time.  It allows me to feel this sense of freedom to do whatever I want; no rules, no time constraints, I can cry whenever I want and most importantly I can transform something great into something AMAZING.  If you are all wondering what I have been painting, I am here to tell you.  My VERY pregnant sister, Holly and her adorable family, just recently moved into a new house.  She settled days after Micah had passed and I really believe it was a TRUE blessing that this happened.  If any of you know me, you know I was drooling at the chance to attack her new house.  I say it was blessing because I now have something to consume my days with, my sister will let me do whatever I want and it is something that I LOVE LOVE LOVE to do. 

Sooooo I dove right in! I am currently in the middle of painting their upstairs and downstairs foyer and we have already had the popcorn ceilings removed in the living room and dining room.  I also snagged Greg Hanson (my handyman) and had him install a backsplash the first weekend they moved in.  It all happened so fast but I am so glad they took my advice and were COMPLETELY on board with my vision. Their kitchen looks GORGEOUS and Mr. Hanson did a rockstar job on the splash!  Sometimes I forget it's NOT my house so I want to THANK Holly and Tom for letting me run loose in their casa.   

Before I leave I want to share this quick mirror makeover that I am just soooooo excited about.  I snagged this super rustic mirror from homegoods and I knew it was perfect for a certain wall in Holly's house but it just wasn't the right color.  The next day I picked up some paint and before they came home from work it was painted and ready to be hung.  Check it out.... 


 I had a little helper along the way... 
My niece Anna

Before                                                                    After
 I am so smitten over this project and all it took was a can of paint to transform this already stunning mirror.  Wait until you see it in the space, it is ridic!!!!

As you can see I LIVE for decorating and I wouldn't have it any other way.  I am so happy that I have this as an outlet and it is something I absolutely ENJOY doing. After going through what I went through this summer I have completely re-evaluated my life and realized I have to go after what I want and NEVER hold back.  This has been a MAJOR revelation for me and I am excited to tell you all that I plan on launching my very own decorating blog VERY VERY soon so stay tuned.  It's one step in the right direction and I hope you all will check it out.

                                                                      I heart Painting and Micah!

A special Thank You!

I just wanted to pop in and give a special THANK YOU to an amazing photographer who was able to capture our love for Micah girl in only a few hours.  I honestly don't know what I'd do without these photos.  They were really really difficult to look at last week but I will treasure them for the rest of my life.  Soooooo, we want to thank Stephanie Singer for donating her precious time, ON HER BIRTHDAY, to come shoot our little girl!  You did the most beautiful job and we will be FOREVERRRRRRR grateful.  XOXO Michelle and Bill

We Heart Stephanie! 

We heart Micah!