Meet Me Mondays

So this is the first Meet Me Monday as I just started to get a few questions.  So here is this weeks question then I will be back to blog life after today!

How Did You Come Up With Your Kids Names and Why is Ethin Not a J Name?
My kids in order of oldest to youngest with their first and middle name/s
Jessa Danyelle
Jonathin Mikeal 
Jayde Daylin Makenzy 
Ethin RaiLuc
So my first three children are from my marriage.  Jessa, Jonathin, and Jayde are all with my ex-husband whose name is Jon.  So there we were two J's having a baby we decided we would use a j name on that child.  When I was born my parents wanted to name me Jessa, but somehow things got messed up on the birth certificate and I was given the name Jessica.  So when I found out I was pregnant I said if it's a girl I want to name her Jessa.  At this time her dad said if it is a girl give her my initials(JDM) and a boy your initials(JMM).  Next came the middle name and I said well let's name her after all her Uncle Dan's whose names were all really Daniel.  Therefore we decided on Danielle, but that was to much a common spelling for me.  So I played with it and came up with Danyelle.  Now if it was a boy we decided on Jonathon so he would have a part of his dad's name in his name.  His middle name was easy and he is named after my biological dad Michael, but that was to common spelling for me so I cam up with Mikeal.  The way I spelled his first name was also common and if pronounced how it sounded should have an I rather than an O so I spelled it Jonathin.
So my first was a girl and she received the name I had picked out Jessa Danyelle
When I found out I was pregnant again we picked out Mishell Nickole for a girl so that in the event it was a little girl we would have a little MnM and kept our previous unused boys name Jonathin Mikeal.  Thank goodness it was a boy and there was Jonathin Mikeal.
Jayde's name carried the most controversy in the house.  Her dad wanted to use the MnM thing and I really did not like it or want it.  So I told him to pick out a J name for a girl he liked he said Jayde I said Jayden he wanted Jayde Daylin and I wanted Jayden Makenzy.  We knew she was agirl form the start and so no boys name was ever considered.  When I had her we still had not agreed so against my ex-husbands wishes I named her Jayde Daylin Makenzy.  LOL poor girl her name is very long with the last name added to it!
First Ethin is not a J name, because I did the J name thing with my ex husband and Ethin was not his and I kind of did not want to name him with a J name however I did think maybe the other kids would want him to be like them.  So what I did was I found 4 biblical names I really liked and asked the kids which one they liked the best: Their was Ethan, Ezekiel, Jonah, and Job.  The kids all wanted Ethan.  I was totally OK with that but knew that I would spell it with an I getting Ethin and it made his name similar to Jonathin's.  Next came his middle name.  Before I knew it was a boy my friend Rai said if it was a girl I should name it after her and I said OK if it is a girl her name will be Margaret Rai.  Well Rai's hubby wanted in on that and said in his very french canadian accent if it was a boy I should name it after him.  I liked the named Luc anc though perfect Ethin Luc James.  Well before I knew it I outgrew James all together and really still like Rai so I combined the two of them into one just not putting spaces between the two RaiLuc.  I loved it and so his name is Ethin RaiLuc!

Next question came from another bereaved parent.

Will You Have More Kids and if So Will you Reuse your Son's name?
I would like to think that yes someday I would like to have another child.  In order for that to happen I would need God to put a good man in my life that I would marry.  As for reusing Ethin's name yes and no.  Ethin's name is his, but I would if I had another child split up his middle name and use that as a way of honoring Ethin.  I named my oldest two children after people as a way to honor uncles and my father.  So as a way to honor Ethin if I had another girl her name would be Margaret Rai and if I had a boy his name would be Nathin Luc.  Having more kids for me is a hope if everything was right, however I do not plan on doing this anytime soon.  



If anyone has a question they would like to ask for Meet Me Mondays please email me at chdhlhs09@yahoo.com   I love being able to answer them and and allows me to write about other things that are not just my grief and the things that are going on.  

Blessings,
Jessica

Blogging or at Least Attempting

So much has been going on and so much has not been going on!  LOL  Sometimes life is such that we think and think and possibly even over think situations.  Me however I analyze it all then give it to God.  It is the waiting on God part that seems to be troubling and hard for me.  However He has not failed me yet so I am trying to just rely on Him to guide a very tough decision.  One that I am not ready to fuly share at this point.  Also I have been thinking about Ethin a whole lot lately.  I am not sure why exactly however I do know that my heart is very broken.  So on with the blogging that I clearly have been failing miserably at these days.
Let's start with if you did not read my previous blog about why CHD Awareness is important I encourage you to do so.  Yes the pictures are hard to look at, but to be honest living it is so much worse.  So for those that were offended I am sorry, but sometimes the truth hurts.  For me the truth is painfully hard and heart breaking.  But I do encourage you to read the previous post if you aev not as THIS IS IMPORTANT!
Next Cuddles From the Heart, MI is starting to collect the 500 blankets needed to hand out in Mott this coming December.  We will be working on boxes and drop off points for MI, but we need to get 500 blankets store bought new, or newly homemade for ages newborn to teens.  These blankets will be given to all the inpatient kiddos at Mott in December.  If you have any questions email me at chdhlhs09@yahoo.com and to send blankets you can mail them to Jessica Twigg 563 Sunset Dr.  Newaygo, MI 49337
So life has been hectic and at times full of tears lately.  I am realizing that life really will never be the same.  I am really starting to face the fact that this is not a dream.  This is very real.  My son died and that is my reality.  The pain hurts and the thoughts come in waves causing a typhoon of emotions.  I have avoided all this for so long and now I can not avoid it it is all very real for me.
About two weeks ago there I was at the cemetery literally huddled over the headstone with Ethin's name on it just screaming and crying.  There was still some snow on the ground and there I was holding that cold granite rock for dear life just screaming into the night.  When my friend arrived she at first just stood there and then knelt down with me and just held me as I held the stone and she let me cry before she finally got me on my feet.  Moments like this are happening more frequently.  My heart really does just ache for him.
I find myself often curled up in my bed holding his things and crying sometimes rocking them.  The tears roll so much more freely now that I am fully leaving myself open to the fact that this is real.  Ethin really is gone and I am really still here without my son.  I find that I think about him so much specially when I see Jonathin.  I just can not help but wonder if Ethin would look like him.  Here is a pic of Jonathin when he was quite young...

And here is one of Ethin

I would say they share some great similarities

On a different note I am still looking for your questions about me or my family to blog them to you.  I had fun with the last one about my J Triplets.  I have one more and plan to blog it on Monday.  I am hoping to do Meet Me Mondays starting this coming Monday.  So email me your personal questions and I will answer them and share them openly and honestly.   

As for the rest of things I am just not able to keep writing right now...Sorry life truly in my head is overwhelming.for me.  I can not always complete thoughts.  Trust me this is frustrating for me too!

Blessings,

Jessica

This is Why it is Important

WARNING:  Pictures in this update may be hard to look at

Hot off Stef Jacks Blog here is the info for all of you that helped write a Letter of Hope for Broken Hearts.  Our voices can be heard here is all the info you need to have your child's story heard in D.C.
I finally have everything ready to share about how you, the many amazing heart mommies and daddies out there, can get your voice heard and also have your child's photo featured in the very same PBS documentary we are part of.

Betsy, the Children's Heart Foundation founder, wants to use the faces of CHD (photos of your adorable heart kids) in the documentary to show how prevalent heart defects are.  She also wants to take your letters to Washington D.C. in April when they lobby congress for CHD Awareness.

If you haven't already put your letter together get to work.  She needs them ASAP!!

In order to have your story taken to D.C. and for your child's photo to appear in the documentary you need to complete a release form and e-mail it along with your letter and photos.  Below is all of the info you need and where you need to send it.  Contact me if you have ANY questions or problems at jacks _rswl (at) mepotelco (dot) net

Important Note:  When e-mailing your info be sure to put your name on the e-mail so they know who it is coming from.

1. Photo(s) of your child
2. Letter sharing your story and most importantly why awareness for CHD awareness is needed.
3. Click on the link to have the release form automatically pop up.  Type in your information (it is Microsoft Word) and save it to your desktop.  Then when you are ready to e-mail your other info attach it to your e-mail and send it off.
4. Send your e-mail to chfbetsy (at) aol (dot) com  (don't forget to remove the spaces and change the (at) to @ and the (dot) to .  in the e-mail address.  Sorry, but in order to prevent her from getting spam e-mails I have to type it this way on the blog.)

Here is the link to the release form http://www.ourlettersofhope.com/CHFTalentRelease.doc  if you do not have Microsoft Word and are unable to open the release form here is the link to the PDF file http://www.ourlettersofhope.com/CHFTalentRelease.pdf .  You can print this off, fill it out and mail it to the address at the bottom of the form.  Just be sure when you e-mail your story and pics to add to your message that you had to mail your release form to TMK Productions because you could not open the release form.

Please share this on your blog or care page site for other heart families to find.  Be sure to link them back to my site so they can find more information on the documentary.  Here is the link to a previous post I did on the documentary http://whenlifehandsyouabrokenheart.blogspot.com/2010/02/part-of-something-good.html

Get to work Heart Families!!!  Let's shake Washington up, make them take notice and help to make a difference for our children!  Together we can do anything!

 This is why AWARENESS is IMPORTANT:

This is Ethin RaiLuc Twigg he is why it is important!  He was born on January 9, 2009 with Hypoplastic Left Heart Syndrome
This is why it is important

 This was the last time I held my son and he was already gone it is important.
This is why it is important

It is important because caskets should not be made this small.  No family should see this!

It is important, because this is my reality and it should not be anyone's reality.  My reality is Ethin's CHD killed him before he ever had a chance to live.  My reality is tears, hurt, anguish, and down right pain.  Now my heart is the broken one.  It is important because no family should go through this.

Triplets??????

Until enough questions are sent to me to dedicate a day through the week to answer a few of them I will be answering one a day!!  However I would encourage you to send me your questions so that I can take 5 once a week and answer them on my blog.  You can email me at chdhlhs09@yahoo.com  So I will answer this question and then blog a minute and encourage you if you have not already read the other blogs from the last 3 days go back and do so. 

Do you really have triplets?  Wow what was that like when they were young?
OK so I know I have stated this before, but I think this is a new reader so I will clarify that no I do not have triplets.  I have three children very close in age that when Ethin was in the hospital one of the docs there nicknamed my kids the J Triplets.  I am not sure if it just because all their names start with J or because they really all look a bit alike with their blond hair and blue eyes!  So here is the jiggy on the J "Triplets"; There is Jessa who is 8, Jonathin who is 7, and Jayde who is 6.  They are all very close in age with not even a year between Jessa and Jonathin and then 14 months and 9 days between Jayde and Jonathin.  So at times I felt like I had triplets! 
They are still young to me, but I assume you meant when they were all 2 and younger those early days before I had a handle on the potty training and feeding themselves.  Well I had Jessa weened from a bopttle before Jonathin was born and she was drinking from sippy cups and straws.  I also had Jessa potty trained before Jayde was born as 3 kids in diapers was not appealing to me.  So Jessa was potty trained right around the age of two.  By the time Jayde ws born Jonathin was also weened from a bottle.  So I only ever had to feed bottles to one child at a time.  Once Jayde started crawling my life was VERY busy.  I had a crawler and two walkers. 
As they have grown I have enjoyed seeing how very close they have grown together.  They all look out for one another.  Of course there is the sibling "love", but what home with more than one child does not have its moments.  I think what I love most about having my kids so close in age has been that they truly are a unit if one goes they all go.  If one is in trouble they are all in trouble together.  They all show such compassion for one another.  They are my world and I would not trade my moments with them for anything.  Being their mom is a gift that I cling to very tightly.  So I hope this answers the question given to me.  Here are the J "Triplets"

 

There is Jayde, Jonathin, and Jessa

Blessings, 

Jessica

They call me Webster!

Wow what a week!!!!  Not sure how better to say it besides WOW!!!  You know I think if I could put a word in the dicitionary I think it would wollywowsers.  This word would be pronounesed Woe-lee-wow-zers.  The definition would be there is no way that really occurred, or so unreal.  I think that would best describe my week.  It was a bit overwhelming and it even mid blog gave me a block earlier this week.  Unreal is what I have thought all week.  However I guess as the week wound down some things turned around but ultimately it ended with a bang.
So after my blog much earlier this week I got a call on Thursday night.  A friend of mine named Claire who is 11 and needs a new heart got the call for her new heart.  She arrived at the hospital around 9:30pm to be told at 4am that the heart was no longer viable.  Such a let down.  That was a sleepless night and it ended not as great as we had all set out hoping for.
Friday came and went without much happening.  Except for I was given the news that I will need to move out of my friends home where I have been staying since January.  This is not great news as I am not sure where to go nor can I find a job, but I am gonna keep my head up that something will work out.  No use stressing right?  WRONG!!!  But that will be my secret to keep!  Make it look good on the outside while I am falling apart on the inside.
So Friday night though I also had to sing in a karaoke contest that I have been participating in.  I did not place in the winners circle, but I did win a trip to the Bahamas.  So in the last two weeks I have won 2 Nickelback tickets, an MP4 player, and now a 3 day 2 night trip to the Bahamas!!!  So that was nice.  However nothing good can be held onto for long as Saturday night I dropped someone off at their home and when the front door was opened smoke came billowing out like and swallowed the night sky.  I spent the next 15 minutes on the phone with 911 and getting people and dogs out of their home.  Thankfully there was no fire, but what had happened was the chimmney did have a small fire in it and the woodstove also back fired into the house filling it with smoke.  Thankfully the children were fine, but from being in there running around last night I do have some smoke inhalation which is affecting me heavily today. 
Then today we went to church.  I love going to church as a family and for the last month or so the kiddos and I have been going all together again with my sister and her baby.  There is nothing better than sitting with the ones you love knowing you will all end up in the same place after this life.  I also sat through an amazing Sunday school class today.  It was a Nooma video on Job.  The story of Job is a great story and one that I personally have felt close to. 
Anyhow the weather here is great and I am excited to take my kids outside to play in a bit, but I want to start doing a few new things on my blog.  Some of the things I will do will allow me to share many things about my life, my children, and who I am.  I am also going to start dedicating certain days to blogging about everything and how I may be feeling and doing, but other days I will be trying to share some great things with all of you. In order for me to share things I need you to all ask me some questions anything and everything can be asked and I will answer allowing you to get to know me better and allowing me to open up more of my life to others. Email me your questions to chdhlhs09@yahoo.com with the subject being Blog Questions.  I am excited to see your questions and even more excited to answer them for you.

May you have at some point today been able to see some of God's amazingness today.  The sun here is warm and gentle on my face.  I am taking the kids to the cemetery this afternoon for the first time since before it snowed.  We all still think of Ethin often, but know that one day we will all be spending eternity with him.  Until then we have some of the most wonderful memories.  I thank God every day for giving me those 5 1/2 months with my sweet Punk.  He is never gone just simply living in us rather than with us. 

Blessings, Jessica

32nd Street Blog Parade

WHAT'S YOUR FAVORITE TIME OF DAY?
My favorite time of day is for sure not antime before noon!!!  I think that I honestly love from 8pm till about 11pm.  This is my favorite time of day, becasue it is the time of the day that all my shows come on through the week that I enjoy watching.  So there is nothing better than a Monday night line up or a Thursday night line up.  My favorite TV shows come on all week long during this time so HOT DOG give me 8pm and beyond!

IF HEALTH WASN'T AN ISSUE WHAT FOOD COULD YOU LIVE OFF OF?
Oh wow I am not so worried about health as much as I am worried about the weight gain that would come with it but I could seriously live off of McDonald's Chicken Selects with their Honey Mustard sauce.  However I do not want a fast food bottom so once in a while it is a nice treat!

IF YOU COULD HAVE ONE WISH GRANTED WITHOUT WISHING FOR MORE WISHES WHAT WOULD IT BE?
I want more than anything to be selfish and wish for Ethin to be back on Earth with me, but I think if I had one wish I would want to not be selfish and allow my wish to change many people.  So I would wish that there was no more thing as Congenital Heart Defects.  If there was no more CHD's so many of the people that I love would be able to live lives out of hospitals and there would be no more parents losing their children to them. 

WHAT'S THE ONE THING YOU GET TEASED ABOUT A LOT?
Well if I am around the Heideman's everything!  Oh if Tom and Tammy read this it will make them laugh.  I get teased a lot for just existing when I am there.  How ever I guess we only pick on those we love and I know that they love me!  So Bring It On I am a big girl I can take it!!!

IF YOU COULD SPEND YOUR LIFE IN ONE MOVIE, BOOK, OR TV SHOW TO LIVE YOUR LIFE IN, WHICH WOULD YOU PICK?  WHAT TYPE OF CHARCTER WOULD YOU BE?
Oh hands down I would totally live in Seattle as a doctor on Grey's Anatomy!  I already am an EMT and I would be Yang's intern to be a cardio thoracic surgeon.  Oh for sure I would need my a McDreamy on there too!!!

IF YOU COULD HAVE ONE TALENT YOU DON'T ALREADY HAVE, WHAT WOULD IT BE?
I think I would want to be an artist.  I can do performing arts, but I can not do wall hanging arts.  I would love to be able to draw and paint.  To express myself in color.  My brother can dray and paint and I always tried, but to much avail my artwork looked like something one of the kids could raw up and pry even better than mine! 

IF MONEY WERE NO OBJECT WHERE WOULD YOU GO ON VACATION?
I think I would like to go to Disney.  I always wanted to go there as a child.  My children also have expressed wanting to go there as well and so I would love to go there with my kiddos and enjoy some fun activities with them.  They say it is a place where dreams come true and I wish that I could help my kids have a few dreams come true.  They deserve it they really do.  However if I were not allowed to take my kids I would totally go to Hawaii!!! 

IF YOU WERE AN AWESOME SINGER WHAT GENRE WOULD YOU BE?
Hmmm this is a funny question as I am in a contest tonight as a finalist for singing.  I love to sing.  But I would if I could record love to record contempary'modern Christian music.  God gave me this talent and I would love to record it for His purposes.  To allow Him to lead me in a ministry of music that would be AMAZING!

IF YOU COULD HAVE A $10,000 SHOPPING SPREE TO ONE STORE, WHAT WOULD IT BE?
Hands down Kohl's!!!!  I love Kohl's it is a one stop shop besides for groceries!  I could easily spend that much money there!  LOL 

IF YOU COULD LIVE IN ANY POINT OR TIME WHEN WOULD IT BE?
I would continually live in January 9, 2009-June 26, 2009.  Never coming to June 27th so that I never had to lose him.  Living with him and the J Triplets over and over again in those short 5 1/2 months.  Oh that would be great to me.  To see that smile daily through those days.  I would take the trials and tribulations it involved during that time to just continually live with all 4 of my kids to always be the mother of 4 children.

IF EVERY OUTFIT IN YOUR WARDROBE HAD TO BE ONE COLOR WHAT COLOR WOULD IT BE?
Hands down PINK!  If it comes in Pink I'll take it.  Any shade will do.  I love Pink though it was not always this way I am a huge Pink lover now!

IF YOU WERE ONEOF THE SEVEN DWARFS WHICH ONE WOULD YOU BE?
I would pry be Doc.  He is so insightful and like the one in charge.  I am or have been said to be pretty insightful and I am much the one in charge and look out for everyone else around me.  However I really would not want to eer be that short!  LOL

WHAT'S THE LAST ALBUM YOU LISTENED TO?
It was "Until The Whole World Hears" by Casting Crowns   LOVE them!!!!

WHAT'S SOMETHING WE WOULD BE SURPRISED TO KNOW ABOUT YOU?
I am a complete Band Geek!!  I can play every instrument in a symphonic style band exept for the flute, oboe, piccolo, and Bassoon!  I started in 6th grade on the Trumpet and just progressed from there.  My favorites are the trumpet and French Horn. 

Some Days You Have Today is NOT the Day!

First I am happy to announce the following things....
Ethin's Heart Still Beats has people that are helping run it and we hope that this will ease the stress during our process of getting our nonprofit status.  The following people are on the board right now: Jen Kurkiewicz, Tammi Heideman, Deanna Traxler, Cassie Bradley, Mandy Daniels, Carrie Crosley, and myself.  We all have specific jobs and we all work together great so now we are all working on the things for EHSB that we need to get our non-profit status.  Woot Woot!!!!  Our next meeting will be at the end of this month.
CUDDLES FROM THE HEART MI
So when I took on cuddles from the heart I was hoping that I may be able to do three blanket give outs in a year this may not be as easily done.  However I am still praying that I can and so the hope is to give out blankets at DeVos Children's Hospital in Grand Rapids, MI in April some time.  In order to do this I need 500 blankets total by April 5th.  Yes it seems impossible, but I know tat it is not impossible.  What I need is new store bought or handmade blankets to give to the children there.  You can mail them to me at
563 Sunset Dr. Newaygo, MI 49337  email me with any questions at chdhlhs09@yahoo.com
OK now on with the rest of it....

Saturday marked Ethin being gone for 8 months.  It hit me pretty hard and this week has been a bit of a lull for me.  I am not sure why all of a sudden I feel the loss so much more greatly than I had been, but I am.  I have cried every day since Saturday and in the back of my head can not get what is going on.  I have again started to think that this is a bad nightmare and I will wake up soon.  I am not sure if this is a normal feeling, but it is how I feel.  Is there really a normal for this?  I would say no, because to me it is not normal to outlive your children.  Yet here I am outliving one of them.

 

This picture was taken by Kristyn LaPres photography

I do not blame God for this, but I wonder at times why this happened.  I wonder what I did so wrong or why he took Ethin instead of someone who had lived a full life.  Did God know how many people my son was going to inpack and the difference he would make?  Did he know that Ethin would have made the same difference if he was here?  I know God did not do this, but I still wonder.  I wonder what he would like right now if he was here.  I imagine he would have looked similar to Jonathin but with brown hair.  Ethin once he hit about 1 month old began to resemble his big brother with dark hair.  Not a bad looking couple of boys if I must say so myself!  However this dire need to know what he would have looked like now has led me to the choice to have his photo aged.  Not sure how weird this is or how normal it is, but I just want to know so badly.
In other news the J triplets are doing great.  Growing like weeds.  I love being a mother.  The best thing God has ever given me has been the opportunity to be a mother.  When I think of everything in my life that really is the one thing that matters and has made a difference.  I LOVE my kids and can not wait to continue to watch them grow up and become productive members of the world.  They all offer something so different to our family.  There will always be a part of our family that is missing, but Ethin not being here does not change the fact that we are a family.  We are a strong family that I do feel hold each other together.  Each of the kids and I bring so much to our home.  I owe so much to my kids and so much to God for trusting me to take care of them.
Being able to find God's amazingness lately has been a great forward move for me.  Do not get me wrong I am not claiming that it is easy, but there has been some great things lately.  The snow is finally melting away here and the sun has been out all week.  I love feeling the sun on my face and feeling it warm my whole body from the outside in. 
Suddenly I am sorry I lost the drive to write.....This may be part of the whole missing Ethin thing.  However I am glad I at least was able to share a few things that I needed to and to make sure you all know I am alive and the kiddos and I are OK.
Blessings,
Jessica