Thursday, December 23, 2010

Ethin's Gifts to the World This Year

Well it is that time of year I guess where you truly start to evaluate all that has happened in a year.  As Christmas approaches I know that there is so much to look forward to, yet I can not help but think of the one thing I want and can not have.
So I rarely write about how I am feeling and what I have been going through with my grief as I thought maybe I needed to just start dealing with it on my own.  However with Christmas right around the corner all I am thinking about is Ethin and the J Triplets.  Jessa, Jonathin, and Jayde will be with me starting Christmas Eve at 9pm until Christmas Day sometimes and I am so excited to have them there, but knowing that not all my children will be there makes it very hard.  So again I am in this state where I feel so full yet so very empty inside.
My kids and I will watch The Polar Express on Christmas Eve and then when they go to bed I will sneek their gifts under the tree!  I can not wait to see their faces light up on Christmas morning.  I just hope that I can feel Ethin with us that day.  Such an awkawrd feeling to have full and empty, happy and sad, excitement and disappointment.....Just polar opposites all the time.....Ugh!
Sometimes as this life continues to unfold in front of me I think that I am doing something terribly wrong by smiling and truly looking forward to the rest of my life.  Then there are times where I crawl into a hopeless despair and I think I can not go on, and then there are times I plaster all the fake smiles and the saying I am good just slips out of my mouth like it is a programmed thing.  The balance is hardly balanced or fair at all! 
I guess I have a few more things to say and this may be my last post until after Christmas.....I need recipes for the recipe book we are making with Hope for BraveHEARTS.  So get us your recipes!!!  Please include your name, city & State and IF you have a heart child their name and defect but if you do not still send us your recipe and name and state to chdhlhs09@yahoo.com


Dear Ethin,
  You have been gone for 1 year, 5 months, 3 weeks, 5 days, 4 hours and 25 minutes as I type this you.  You are still at the fore front of thought in everything that I do.  Last Christmas one thing I did as a way to remind myself of all that you have gifted to this world was write down the things that have happened last year because you were a part of this world.  So this year I am going to do the same thing....Here it goes. 
There have been over 250 blankets collected
The 1st Annual EHSB Heart Ball took place and we raised $1836
On July 1st of this year Ethin's Heart Still Beats was corporated in the state of MI as a non-profit Organization
July 17th we held the 1st Annual EHSB Family Fun Day and raised just over $300
In February Newaygo High School hosted the 1st Annual Newaygo Lions Have Heart Basketball game and we raised $500
In January the city of Newaygo and the county of Newaygo Proclomated and Resolved February 7-14th as CHD Awareness Week
You see son you are still very alive in so many people and I am so proud of what you still accomplish!  You are an amazing child.  If ever a life could touch the hearts of others it is truly yours that does this.  You have not been forgotten by anyone.  Merry Christmas my sweet Angel Punk, I love you Always, Mommy

Saturday, November 27, 2010

17 months after

I guess that a post is long coming from me.  Sorry it has been so long.  The hustle and bustle of every day life really has been just never ending.  As far as every day life goes I guess you could say it is what it is.  The J Triplets are getting big and doing well in school. 
Jonathin turned 8 last month and Jessa will be 9 on Monday.  Before the year is up Jayde will also have her birthday and she will be 7.  I am working two jobs and running Ethin's Heart Still Beats.  I am playing basketball and spending as much time as possible with the kiddos.  Yes I am playing basketball for the first time since high school on an organized team.  This really may not be the best idea I have ever had as at the very first practice I broke my finger.  LOL I only laugh because I should have learned through softball that I am pry not as viable as I used to be.  Softball season ended with countless bruises, a sprained ankle, and being knocked out once.  I am die hard though and none of that held me back from still playing!
I have some very exciting news and need your help!!!!  Ethin's Heart Still Beats is collaborating with Hope for BraveHearts and we are making a cook book to hopefully have printed and ready to sell in February for CHD Awareness Week 2011!!!  So what I need is for you to submit me recipies that we can put in this cook book!!!  If you know the caloric intake per serving that would be great, but if not that's OK we have a way to figure it out.  If you have any good fat free recipies please send those as we are putting together a fat-free section for those that need a fat free diet.  So please email them to me at chdhlhs09@yahoo.com include your name, city and state and if you are a heart mom please include your heart child's name and defect.  We want recipes from everyone though.  Looking forward to receiving your recipies.  Oh and here is a sneek peek at one of the cover possibilities for the cook book!!!  Shannon has not even seen this yet!
Alright I really got on here tonight though, because I need to share some things.  Thanksgiving was two days ago.  It was not an easy day, but it was far better than last year.  I started out by eating dinner with a special someone and his family.  I was responsible for sweet potatoes and a cheese cake.  Let me just say that I scored big with both!!!!  LOL  Then after that I went and picked up my kids from their dad and we as a family went and had dinner with the Miller's.  They are a heart family that lives close to us and that we have grown very close to.  It was an amazing day really to be with so many people that I love.
Even though it was all that there was still a big part missing.  It is always a hard concept for me to fully grasp that at times I feel so full yet so empty.  I did however on Thanksgiving take some time in the morning to reflect on the things I was thankful for and here is what I came up with:
My children all 4 of them
God
My job and the people I work with
Ethin's Heart Still Beats and the amazing board I have

Alright not only was Thanksgiving just a few days ago, but today marks 17 months since my son was alive.  I truly can not believe it has been that long.So many times I wish I could have it all back and things could be what they were and what they were supposed to be.  That things could be the way I dreamed they would be when I had Ethin.  Instead they are the way God planned them to be and yes I am doing better with this, but I still have moments and lately I have been having many of those moments.  Those moments where the reality is so real that it is painful and almost as though maybe this is still a very bad dream.  
Yes the pain lately especially at night is so overwhelming that I really at times think that maybe this is not really happening.  That just maybe the last 17 months has been a terrible nightmare and I will wake up any second and have Ethin in my arms.  That I will go into bedrooms and tuck in all four of my children.  In these moments I normally cry myself to sleep and I of course wake up in the morning to reality and the vicious circle starts again.  
So 17 months later I can honestly tell you all that it does not get better or easier it just keeps getting different.  The different is becoming more manageable and it is becoming my new normal.  It is the new normal I am still learning to live with.  Life after the loss of my son is still and I am sure will always be a process I will go through.  
17 months after I said my last goodbyes to my son God is still showing me His purpose and His Hopes for me.  I am truly blessed.  Ethin still is very alive in so many people and though it is not always easy for me I am comforted by the fact that I know this is not forever.  This is temporary.  God through Ethin has opened my life to a life that I never would have had without him.  As awkward as it is I am thankful for the life I have.  I am truly blessed.  17 months after Ethin left this world I am truly thankful for so many things in my life.  
I have to go to work now.....I will write another update soon.....Please take the time to be thankful for the little things in life!  
Blessings, 
Jessica



Monday, October 25, 2010

So Much Going On!!!

2nd Annual Ethin’s Heart Still Beats Heart Ball
Saturday January 8, 2011
VFW Hall
9075 Mason Dr
Newaygo, MI 49337

Doors will open at 5pm
A welcome will happen at 5:30pm
Dinner immediately following the welcome 6pm-7pm eat dinner
7pm Auction
745pm introduction of a speaker
8pm Guest Speaker

Tickets are $30 for one or $50 for two.  Tickets include a four course dinner, open bar, auction bidding paddle, and your night of knowing that Ethin’s Heart Still Beats…..”It Beats in us”


A list of Auction items and a full program will be up as we continue to fill in the details for the ball as well as an announcement of the theme for the night.  Last year was "HOPE" this year the theme is "The Difference of a Heart" If you have any questions or would like to make arrangements for reserving tickets please email Jessica Twigg founder of Ethin's Heart Still Beats at chdhlhs09@yahoo.com or call 616-634-3029

For the Heart Ball this year we are creating a video with kids with CHD's and their families doing things that make a difference...Maybe it's a heart walk, an organization that you founded, or maybe it's going to the hospitals and giving things to patients and families to make their lives a little easier...What ever it is we want you to send us an email and pictures of you and your child and family making a difference!  Email them to EHSB at chdhlhs09@yahoo.com




Also my work Wendy's of Newaygo is a donation site for Cuddles From the Heart!!!!  How amazing to know that my bosses and coworkers believe in what we do!!!  So stop by and see me at work and bring in your blanket!!!  Also now you can drop off blankets at Bills Shop -N- Save or True Value Hardware in Fremont!!  And also Wendy's restaurant's of Muskegon Henry, Sherman, Apple, and Grand Haven!
Cuddles From the Heart MI is starting to collect blankets for newborn through teenagers!  We give out the blankets in December and we would like to have 500 by then.  We are a bit slow in starting to ask for them as last year we began asking for them at the end of July and it is now mid August. 

Cuddles From the Heart (CFH) started two years ago in Iowa by heart mom Stefanie Jacks.  Last year she opened it up for any state to do.  In June I told her I would like to do it for MI and after Ethin passed away later that month I still said that I wanted to do it!  I am so glad that I did!  It was rewarding and amazing to see how much people truly care about others!  So here we are this year hoping to do the same thing.  Our goal last year was 500 and we did just over that.  Same goal this year 500!!!  We can do this!! 

What we need is new homemade or store bought blankets ranging from newborn to teenagers for boys and girls to give out at U of M Mott Children’s Hospital in December.  The blankets are a very comforting thing to many families while they are in there and sometimes just one blanket can make the hospital feel a little less like the hospital.  Ethin’s Heart Still Beats board members are all ready to go to Ann Arbor in December and as a board we decided that we want to do this so you can mail your blankets to
E.H.S.B
9172 S. Croswell Ave.
Newaygo, MI 49337
If you have any questions you can email me at chdhlhs09@yahoo.com
 
Also I am in need of your favorite recipes!!!  We are teaming up with another non-profit organization called Hope For Bravehearts to create a world-wide From the Heart Cook Book.  You can submit up to 2 recipes and we would like if you can to let us now the caloric intake per serving on your recipe.  You can email them to us at chdhlhs09@yahoo.com  Please include the name of your recipe, your name and where you are from!  Books will be published and available for purchase.  As that info becomes available I will keep you posted! 

So onto the life stuff........WOW I am busy and things are finally slowing down and then they just get busier!  Work keeps me occupied, the kids keep me going, and EHSB gives me a reason to know that Ethin is always here!  
So soccer season is officially done....Normally something I do not like to see happen, but with the heart ball and everything else right now the break before spring will be nice.  It allows me to focus on the big things going on with EHSB. 
Here is a sneak peek on our new family photos!!!









We are HUGE Michigan State fans!!!  By the way have you seen MSU is ranked #5 right now and we are to this point undefeated!  Look out Iowa here we come!  (Stef and Jen I love you guys!)  But I hope we kick some Hawkeye butt!  
So the kids had conferences here last week.  Jessa, Jonathin, and Jayde are doing GREAT!!  Jonathin's conference was the BEST conference ever!!!  Jayde is a chatty Kathy and a giggler.  Jessa well she is Jessa and really she never disappoints in conferences! 
Well Halloween is approaching which means that shortly after that everything I hate about the fact that I lost a child is approaching as well.  Is it OK to feel overwhelmed with everthing?  I mean is it OK that even though I am busy as all get out that when I slow down just a little bit I feel overwhelmed?  I feel like I have avoided so much of this for so long and I am still just not ready to face so much of it.  Oh the holidays are coming and there is no stopping it.....
So the big question this year as Thaksgiving is approaching is wether or not I put up a tree this year which I did not do last year.  My problem with this dilema is that I still do not have that perfect ornament that is Ethin.  There is still a void to me with holidays that he is not a part of it.  I pray that God will continue to soften my heart and that perhaps this year will not be as dreadful as last year.

Blessings,
Jessica

Thursday, October 21, 2010

Happy Birthday Jonathin!

Lots going on so read a previous update I will even later write about homecoming with a cool pic, but today it's all about this guy...........







Jonathin is 8 years old today!

Friday, October 8, 2010

Sometimes I have a lot to say

2nd Annual Ethin’s Heart Still Beats Heart Ball
Saturday January 8, 2011
VFW Hall
9075 Mason Dr
Newaygo, MI 49337

Doors will open at 5pm
A welcome will happen at 5:30pm
Dinner immediately following the welcome 6pm-7pm eat dinner
7pm Auction
745pm introduction of a speaker
8pm Guest Speaker

Tickets are $30 for one or $50 for two.  Tickets include a four course dinner, open bar, auction bidding paddle, and your night of knowing that Ethin’s Heart Still Beats…..”It Beats in us”


A list of Auction items and a full program will be up as we continue to fill in the details for the ball as well as an announcement of the theme for the night.  Last year was "HOPE" this year the theme is "The Difference of a Heart" If you have any questions or would like to make arrangements for reserving tickets please email Jessica Twigg founder of Ethin's Heart Still Beats at chdhlhs09@yahoo.com or call 616-634-3029

For the Heart Ball this year we are creating a video with kids with CHD's and their families doing things that make a difference...Maybe it's a heart walk, an organization that you founded, or maybe it's going to the hospitals and giving things to patients and families to make their lives a little easier...What ever it is we want you to send us an email and pictures of you and your child and family making a difference!  Email them to EHSB at chdhlhs09@yahoo.com




Also my work Wendy's of Newaygo is a donation site for Cuddles From the Heart!!!!  How amazing to know that my bosses and coworkers believe in what we do!!!  So stop by and see me at work and bring in your blanket!!!  Also now you can drop off blankets at Bills Shop -N- Save in Fremont!!
Cuddles From the Heart MI is starting to collect blankets for newborn through teenagers!  We give out the blankets in December and we would like to have 500 by then.  We are a bit slow in starting to ask for them as last year we began asking for them at the end of July and it is now mid August. 

Cuddles From the Heart (CFH) started two years ago in Iowa by heart mom Stefanie Jacks.  Last year she opened it up for any state to do.  In June I told her I would like to do it for MI and after Ethin passed away later that month I still said that I wanted to do it!  I am so glad that I did!  It was rewarding and amazing to see how much people truly care about others!  So here we are this year hoping to do the same thing.  Our goal last year was 500 and we did just over that.  Same goal this year 500!!!  We can do this!! 

What we need is new homemade or store bought blankets ranging from newborn to teenagers for boys and girls to give out at U of M Mott Children’s Hospital in December.  The blankets are a very comforting thing to many families while they are in there and sometimes just one blanket can make the hospital feel a little less like the hospital.  Ethin’s Heart Still Beats board members are all ready to go to Ann Arbor in December and as a board we decided that we want to do this so you can mail your blankets to
E.H.S.B
9172 S. Croswell Ave.
Newaygo, MI 49337
If you have any questions you can email me at chdhlhs09@yahoo.com


This week has been long and strenuous for lots of reasons.  I mean my life truly is still jam packed and full of everything, but the inner need I have to grieve.  Trying to find the healthy balance of grieving and still living is one of the hardest things I have ever had to learn to do.  Ya know I am not sure I am learning to do it I would say I am just doing it.
Soccer season is about half over now and it has been wonderful being able to coach both Jessa and Jayde.  However coaching two teams has been way harder than coaching just one.  Not to mention Jonathin is always at the fields and he in himself is a handful.  He really is my child let there be no doubt!  Not to mention in my small town like most small towns fall is here which also means football has started and it IS a big deal.  So Friday nights there is football!!!  I love fall!  Tomorrow is Homecoming and I am excited to take my kids there for the game this was us in October 2008 at homecoming (I was pregnant for Ethin)....

Yes we went all out... Football is a BIG deal here....
Last year I did not go to homecoming and so this year I am going with the kids and we will have fun we WILL e normal again, We WILL live, but we do still grieve and just because we can learn to do this again does not mean we have forgotten...In my heart I so wish I was dressing Ethin in all black white to go to the Homecoming festivities here.  The reality is I will never do this and it is why I did not go to the game last year, but for the J Triplets I need to move on I have to live again for them and with them.
Looking at these pictures is an odd memory for me as I remember very well the excitement of not just the game, but the fact that our family was going to go from four to five.  Jayde was excited about becoming a big sister and Jonathin was stoked that I was going to have a boy and he was going to have a baby brother, Jessa was so ready to be the big sister again and she talked about how she wanted to help so much.  As of this time of this homecoming game I still had not told them how special their brothers heart was.  They had no idea.  Maybe I could have prepared them better, but I did not and now Ethin is very much a memory to them.  The truth is maybe I should have prepared myself a little more.  Ethin is so much more than just a memory to me he is a part of me that is gone.  He is a part of me that I am missing and I can not get back.  I am not ready to grieve and I am not ready to let go.  That right there is the key answer to my problem....I am not ready to let go and grieve I fear that if I fully grieve Ethin I will let him go and he will become just a memory to me...
Another thing this week that has been hard is that the CHD community has lost 9 CHD'ers.  1 is to many but 9 in one week!!!  And who knows how many more....Also today there is a family that I have gotten to know through the CHD community that there son today would have been one....Aiden Matthew Beers was born a year ago today and his parents like me last January do not get to watch him eat his first birthday cake.  It just is not fair!!!  It is not fair that there are other parents who know how I feel, It is not fair that I know what other parents are going through, it is not fair that CHD's claim so many lives!  IT IS NOT FAIR and it makes me mad and angry and it makes me cry.  It saddens my heart!
I may be all over the place and for that I am sorry....But back to football....I am a HUGE Michigan State fan.  This Saturday is the big game for MSU and U of M football fans.  So I will be watching football on Saturday too.  And Stef when you read this I just want you to know that we are going to win against Iowa this year too!!  LOL GO STATE all the way!
Blessings,
Jessica

The Tree
Mommy I want to share some things with you so you know I am just fine
Jesus sat with me in his garden and we talked about how it is OK to sometimes send you a sign
We talked about how happy he is when I show other kids where to play
And He told me how proud He is that I never forget to pray
Jesus walked me to a special place in His garden and showed me a beautiful tree
Mommy He said that tree grows with the love you hold for me
I think it may be the biggest tree in the garden and some branches are extra long
When I asked God about those branches He said those ones are when you have been extra strong
There are some knots in the tree and my wondering mind just had to ask I wanted to know
Jesus said that sometimes your life has been rough but you always turn to Him and from that you grow
While I stood there and examined the tree Jesus said it was time to help you truly heal
He said we'd carve a heart and it would imprint yours but He promised no pain from this carving you'd feel
Jesus pulled me on his lap and tickled my belly and asked if I wanted to help you feel better
Then he sat me down and told me to go ahead and write you this letter
So here I am mommy I want you to know I am OK and I am learning things you wanted me to
I am proud of you mommy and just keep looking for my signs I send, remember that I love you!
Jessica Twigg October 8, 2010

This is one of my favorite pictures of Ethin and I

Sunday, September 26, 2010

No title today

2nd Annual Ethin’s Heart Still Beats Heart Ball
Saturday January 8, 2011
VFW Hall
9075 Mason Dr
Newaygo, MI 49337

Doors will open at 5pm
A welcome will happen at 5:30pm
Dinner immediately following the welcome 6pm-7pm eat dinner
7pm Auction
745pm introduction of a speaker
8pm Guest Speaker

Tickets are $30 for one or $50 for two.  Tickets include a four course dinner, open bar, auction bidding paddle, and your night of knowing that Ethin’s Heart Still Beats…..”It Beats in us”


A list of Auction items and a full program will be up as we continue to fill in the details for the ball as well as an announcement of the theme for the night.  Last year was "HOPE" this year is still available for ideas.   If you have any submit them here.
If you have any questions or would like to make arrangements for reserving tickets please email Jessica Twigg founder of Ethin's Heart Still Beats at chdhlhs09@yahoo.com



Also my work Wendy's of Newaygo is a donation site for Cuddles From the Heart!!!!  How amazing to know that my bosses and coworkers believe in what we do!!!  So stop by and see me at work and bring in your blanket!!!
Cuddles From the Heart MI is starting to collect blankets for newborn through teenagers!  We give out the blankets in December and we would like to have 500 by then.  We are a bit slow in starting to ask for them as last year we began asking for them at the end of July and it is now mid August. 

Cuddles From the Heart (CFH) started two years ago in Iowa by heart mom Stefanie Jacks.  Last year she opened it up for any state to do.  In June I told her I would like to do it for MI and after Ethin passed away later that month I still said that I wanted to do it!  I am so glad that I did!  It was rewarding and amazing to see how much people truly care about others!  So here we are this year hoping to do the same thing.  Our goal last year was 500 and we did just over that.  Same goal this year 500!!!  We can do this!! 

What we need is new homemade or store bought blankets ranging from newborn to teenagers for boys and girls to give out at U of M Mott Children’s Hospital in December.  The blankets are a very comforting thing to many families while they are in there and sometimes just one blanket can make the hospital feel a little less like the hospital.  Ethin’s Heart Still Beats board members are all ready to go to Ann Arbor in December and as a board we decided that we want to do this so you can mail your blankets to
E.H.S.B
9172 S. Croswell Ave.
Newaygo, MI 49337
If you have any questions you can email me at chdhlhs09@yahoo.com


So in other news......
 The girls started soccer last week!!  I am coaching Jessa and Jayde's teams this year!  What a handful!  I have the best teams and kids though.  My parents are great to work with and I truly love coaching and both girls are happy I am coaching them.  I will get pics up when I get some.  Always hard to coach and take pictures though!  LOL
  Well my echo came back normal!!  My tilt table test was negative.  I go back to the card in November.  Until then no need to worry as that will not change anything so I am just giving it to God and letting him handle it.
  Life is so busy here I am currently applying for the local fire dept., working, doing the EHSB stuff, and coaching soccer!  God has truly blessed my life and for that I am thankful.  However even as busy as I am I have been thinking about Ethin more than usual.
  So many things right now remind me of him and how much I miss him.  I so badly wish he was here.  I keep wondering what life would be like if he were here.  And when I am lying in my bed at night I can not help but think that I should have a crib in my room for him.  Sometimes it is so hard for me to always see the good.  I had a very angry moment last week and it scared me and then I just broke down crying.  I apparently am truly starting to grieve for Ethin.  A part of me did not want to do this and then there is a part of me that so badly needs to.  For the 15 months I have truly avoided it and now I am facing it and I am terrified and I cry again so much.
Blessings,
  Jessica

Wednesday, September 22, 2010

Lots happening!!! Announcing!!!..............

2nd Annual Ethin’s Heart Still Beats Heart Ball
Saturday January 8, 2011
VFW Hall
9075 Mason Dr
Newaygo, MI 49337

Doors will open at 5pm
A welcome will happen at 5:30pm
Dinner immediately following the welcome 6pm-7pm eat dinner
7pm Auction
745pm introduction of a speaker
8pm Guest Speaker

Tickets are $30 for one or $50 for two.  Tickets include a four course dinner, open bar, auction bidding paddle, and your night of knowing that Ethin’s Heart Still Beats…..”It Beats in us”


A list of Auction items and a full program will be up as we continue to fill in the details for the ball as well as an announcement of the theme for the night.  Last year was "HOPE" this year is still available for ideas.   If you have any submit them here.
If you have any questions or would like to make arrangements for reserving tickets please email Jessica Twigg founder of Ethin's Heart Stil Beats at chdhlhs09@yahoo.com



Also my work Wendy's of Newaygo is a donation site for Cuddles From the Heart!!!!  How amazing to know that my bosses and coworkers believe in what we do!!!  So stop by and see me at work and bring in your blanket!!!
Cuddles From the Heart MI is starting to collect blankets for newborn through teenagers!  We give out the blankets in December and we would like to have 500 by then.  We are a bit slow in starting to ask for them as last year we began asking for them at the end of July and it is now mid August. 

Cuddles From the Heart (CFH) started two years ago in Iowa by heart mom Stefanie Jacks.  Last year she opened it up for any state to do.  In June I told her I would like to do it for MI and after Ethin passed away later that month I still said that I wanted to do it!  I am so glad that I did!  It was rewarding and amazing to see how much people truly care about others!  So here we are this year hoping to do the same thing.  Our goal last year was 500 and we did just over that.  Same goal this year 500!!!  We can do this!! 

What we need is new homemade or store bought blankets ranging from newborn to teenagers for boys and girls to give out at U of M Mott Children’s Hospital in December.  The blankets are a very comforting thing to many families while they are in there and sometimes just one blanket can make the hospital feel a little less like the hospital.  Ethin’s Heart Still Beats board members are all ready to go to Ann Arbor in December and as a board we decided that we want to do this so you can mail your blankets to
E.H.S.B
9172 S. Croswell Ave.
Newaygo, MI 49337
If you have any questions you can email me at chdhlhs09@yahoo.com

Thursday, September 9, 2010

Heart Mom to Heart Patient

Cuddles From the Heart MI is starting to collect blankets for newborn through teenagers!  We give out the blankets in December and we would like to have 500 by then.  We are a bit slow in starting to ask for them as last year we began asking for them at the end of July and it is now mid August. 

Cuddles From the Heart (CFH) started two years ago in Iowa by heart mom Stefanie Jacks.  Last year she opened it up for any state to do.  In June I told her I would like to do it for MI and after Ethin passed away later that month I still said that I wanted to do it!  I am so glad that I did!  It was rewarding and amazing to see how much people truly care about others!  So here we are this year hoping to do the same thing.  Our goal last year was 500 and we did just over that.  Same goal this year 500!!!  We can do this!! 

What we need is new homemade or store bought blankets ranging from newborn to teenagers for boys and girls to give out at U of M Mott Children’s Hospital in December.  The blankets are a very comforting thing to many families while they are in there and sometimes just one blanket can make the hospital feel a little less like the hospital.  Ethin’s Heart Still Beats board members are all ready to go to Ann Arbor in December and as a board we decided that we want to do this so you can mail your blankets to
E.H.S.B
9172 S. Croswell Ave.
Newaygo, MI 49337
If you have any questions you can email me at chdhlhs09@yahoo.com


So yesterday was a very overwhelming long day for me.  I spent hours at a cardiologists office.  Yes I am officially a heart patient right now.  So here is what I know as of right now....
1. I do not like my cardiologist
2. I have a fast heart rate that is either SVT or abnormal sinus tachycardia
3. I have a murmur
4. I have my first echo at 8am and another test at 11am
5. Did I mention I do not like my cardiologist?

Prayers please as I continue to find out what is going on in my heart.  As I sat there in the cardiologists office yesterday all I could think is the last time I had to sit in an office to hear news about a heart the news was not good.  Then the card came in yesterday and his news was also less than impressive!  However not hopeless.  I just can not shake the feelings of guilt I am having with this or the fear or the shock of hearing it all.  It was a lot to take in.  All I keep thinking is there is some of it I knew and some I did not know.  I also keep telling myself that I am to young for heart issues.  How selfish that must sound as my son was born dealing with them.
Yes Ethin crossed my mind all day yesterday as I sat there in that room and everyone that came in apologized that I lost my son to a heart defect.  Then the doctor came in and this is the conversation that took place after he checked my pulse:
Doctor: You have a fast heart rate
Me: Really I was wondering why I was here thank you Dr. Obvious
No kidding I really said that to the guy that will be giving me cardiac care! 
OK so this post is now in day two of writing and I am sitting in the waiting room right now for a test at the Heart Center in Grand Rapids.  Not to mention I had an echo first thing this morning.  Felt so weird to look at an echo of MY heart.  Also brought a few tears to my eyes.  I wish I was not doing all this alone. 
Alright so here is what I know about my heart right now: There is a small murmur and it beats to fast.  Here is what the doctor has had to say: murmur no saying for sure (This is the reason for having an echo this morning), Heart Beating to Fast could be Abnormal Sinus Tachycardia treated with meds, SVT or something with the SA node means a heart cath ablation........I think none of this sounds good! 
Alright they are calling me back so here we go more adventures with my heart......Still to weird that I am the heart patient!  Blessings, Jessica

Monday, August 30, 2010

Something's Missing

Cuddles From the Heart MI is starting to collect blankets for newborn through teenagers!  We give out the blankets in December and we would like to have 500 by then.  We are a bit slow in starting to ask for them as last year we began asking for them at the end of July and it is now mid August. 

Cuddles From the Heart (CFH) started two years ago in Iowa by heart mom Stefanie Jacks.  Last year she opened it up for any state to do.  In June I told her I would like to do it for MI and after Ethin passed away later that month I still said that I wanted to do it!  I am so glad that I did!  It was rewarding and amazing to see how much people truly care about others!  So here we are this year hoping to do the same thing.  Our goal last year was 500 and we did just over that.  Same goal this year 500!!!  We can do this!! 

What we need is new homemade or store bought blankets ranging from newborn to teenagers for boys and girls to give out at U of M Mott Children’s Hospital in December.  The blankets are a very comforting thing to many families while they are in there and sometimes just one blanket can make the hospital feel a little less like the hospital.  Ethin’s Heart Still Beats board members are all ready to go to Ann Arbor in December and as a board we decided that we want to do this so you can mail your blankets to
E.H.S.B
9172 S. Croswell Ave.
Newaygo, MI 49337
If you have any questions you can email me at chdhlhs09@yahoo.com




Summer really does fly by!!!  Yesterday I had my kiddos and we went to the beach with my dad.  What a great time!!!
So here we are one summer later all smiling and genuinely enjoying life.  On this stump that I am sitting on Jessa looked down and said look a heart.  I looked and somehow on that stump it looked like there was a heart.  Jessa said Ethin is here mom!  I just smiled and told her yes he was.

This was a hand pump there and here is Jayde making it go!  To funny not to share....It really took all she had to accomplish this! 

As summer winds down and I anticipate the fall weather and activities I also still think about Ethin too.  Yesterday was a great day at the lake with the J Triplets.  However as much fun as it was and as perfect as it felt there was something missing.  There was SOMEONE missing.  No matter what things we find that remind us of Ethin he is still physically missing and at times that is hard.  It truly has been a delicate dance over the last year to figure this out and I have not figured it all out yet.
I am having a hard time keeping this positive and have seriously written and deleted about 8 paragraphs so I am going to share this poem that I wrote and call it a day.....
Blessings,
Jessica

The Age You Should Be
Today like most days you certainly crossed my grief stricken mind
The world has a way of bringing me down my weakness is not hard to find
Someone will appear with a little boy about the age you should be
And I always wonder what you would be like if you were here with me
I can hear that little boy throwing a fit and his parents getting irritated
How I wish I too had you here to throw a fit and make me frustrated
To hear a little boy about the age you should be cry for his mommy
How I wish that I could hear you say those words and look up at me
I wish I was the parent who was able to bribe you into eating things you do not like
I wish that I was able to help you learn to ride your very first bike
You would be walking by now and how I would love to walk with you and hold your little hand
It’s summer time here and I wish we could go to the beach and we could play in the sand
I try to imagine what you may look like and how big you would be
I wonder if your smile would still be the same and if your eyes would still be bright when you looked up at me
I would love to tuck you into bed and teach you how to pray
You are about that age where you would be learning new words you would have much to say
So many times I see a mom pick her little boy the age you should be up and hold him tight
Sometimes it brings a tear to my eye knowing I can not do that sometimes it is a hard sight
So I am trying when I see a little boy about the age you should be to think of where you are and what you may be doing there
Though it is hard to do and most days I still think that this is unfair
I think that in Heaven you are walking with Jesus holding his strong firm hand
Perhaps you are up there with other little children building castles in the sand
Maybe you are playing hide and seek and running through fields all day
I bet you talk a lot you would get that from me I am sure you have a lot say
On Earth I see things all the time that remind me of you
Does that happen in Heaven do things remind you of me too?
Son this Earth seems cruelly unfair while we seem so very far apart
But I know we are together you are forever in me with memories and living in my heart
One day I know that this too shall pass that we are separated like this
But until the day I come to Heaven I will be here on Earth and you I will miss
I know that there will always be times when I see a little boy about the age that you should be
And while I am here and you are there those times will always be hard for me
I am glad that you know of no sadness there that you never have to cry a single tear
You are perfect with a whole heart you never are lonely and you know nothing about fear
I miss you Ethin and life is nothing like it used to be or the way it would be if we were physically together
But we will be one day in Heaven together and until then we are in my heart forever
Jessica Twigg
8-11-10

Wednesday, August 25, 2010

Every Heart Has a Story

Cuddles From the Heart MI is starting to collect blankets for newborn through teenagers!  We give out the blankets in December and we would like to have 500 by then.  We are a bit slow in starting to ask for them as last year we began asking for them at the end of July and it is now mid August. 

Cuddles From the Heart (CFH) started two years ago in Iowa by heart mom Stefanie Jacks.  Last year she opened it up for any state to do.  In June I told her I would like to do it for MI and after Ethin passed away later that month I still said that I wanted to do it!  I am so glad that I did!  It was rewarding and amazing to see how much people truly care about others!  So here we are this year hoping to do the same thing.  Our goal last year was 500 and we did just over that.  Same goal this year 500!!!  We can do this!! 

What we need is new homemade or store bought blankets ranging from newborn to teenagers for boys and girls to give out at U of M Mott Children’s Hospital in December.  The blankets are a very comforting thing to many families while they are in there and sometimes just one blanket can make the hospital feel a little less like the hospital.  Ethin’s Heart Still Beats board members are all ready to go to Ann Arbor in December and as a board we decided that we want to do this so you can mail your blankets to
E.H.S.B
9172 S. Croswell Ave.
Newaygo, MI 49337
If you have any questions you can email me at chdhlhs09@yahoo.com

Every Heart Has A Story

In may of 2008 my life was busy I had just moved and was adjusting to being a single parent when I found out I was pregnant.  My pregnancy started off very rough and I was put on bed rest due to placenta previa.  On a visit to the perintologist I was told that my placenta had moved back to a normal position, but they thought there was something wrong with my child’s heart.  July 17, 2008 I was given news that no parent wants to hear.  My baby a boy my children and I had decided to name Ethin was going to be born with a Congenital Heart Defect (CHD) called  Hypoplastic Left Heart Syndrome (HLHS).

The doctors that day had me decide what I wanted to do and I knew I was going to have my son and give him the best chance at survival I could.  This meant delivering my son in Ann Arbor, MI at the University of Michigan Mott Children’s Hospital three hours from my home.  I had many appointments with my pregnancy and Ethin was growing well and was truly perfect with a very special heart.

On January 9, 2009 at 4:01pm Ethin entered this world by c-section screaming like a normal baby.  I remember just feeling elated I heard him cry, but sad that I did not get to see him.  Ethin was whisked off into the neonatal unit to begin his medical testing to see how bad his little heart was.  In the meantime I was doing everything I could in the recovery room to just prove I was well enough to be wheeled in to meet my son.

Finally at 8:30pm they wheeled me down to “meet” my son.  By the time I was wheeled into the room Ethin already had IV’s started and he was intubated.  All the hopes I had of holding my sweet newborn went crashing down right before my eyes.  However I got to touch him and look at him and he was PERFECT!  He was the most amazingly beautiful little baby boy in that unit.

The next day Ethin was taken up to a Pediatric Cardio Thoracic ICU (PCTU) or Pod A.  For the next five days I did nothing more than sit by his incubator and kiss his head, pray, hold his hand, and read to him.  I longed to hold him and finally when he was six days old at 6am a team of four people picked up my son and placed him into my arms.  He fit there perfectly like a puzzle piece that I had been missing for six days.  This sadly was also the morning they would take my son out of my arms and wheel him into a surgery room for his first open heart surgery called the Norwood.

I spent that whole day in a waiting room just waiting for them to come up and tell me how we was doing.  Finally they came up for the last time and it was his surgeon she let me know he was in critical condition but that I could go back and see him in an hour.  I went back and seen him and he looked really bad.  He was very swollen and his chest was left open.  The next two weeks were slow moving, but finally he was out of PCTU and I was able to feed him, dress him, change him, bathe him, I was really his mommy.

When Ethin was 3 ½ weeks old we finally went home.  His sisters were very tentative and his brother just liked knowing he had a baby brother.  Sadly home was a short lived thought when on our sixth day home Ethin became very ill and we found ourselves at a local ER awaiting a critical transport back to U of M.  Once back at U of M Ethin began to decline and needed to be intubated again if he as to live as he could not breathe on his own.  Somehow Ethin had caught a respiratory virus and after just 2 ½ weeks in the hospital we were home again.

Home this time was an adjustment.  He had so many medicines for his heart and doctors every week.  It was busy but I had my other children who loved being able to be a part of his care and looked forward to feeding him and cuddling with him too.  After 3 ½ weeks home though Ethin again became very ill and was again taken back to U of M.  Once there it was determined that Ethin had caught rotavirus.  Ethin’s special heart made it very hard for him to fight off any sickness.  U of M also decided at this time that he would need his second surgery the Hemi-Fontan.

April 1, 2009 was the morning of his surgery.  I held him all night the night before and I prayed with him and I told him how he had to fight and that I needed him.  At around 11am on the 1st they let me sit in a wheel chair holding him to go down to the surgical holding area.  By 11:30 a nurse came in and told me it was time and she put out her arms and very reluctantly I handed over my son.  At 7:30 they finally came and got me to go back and see him in the PCTU.

Ethin was not doing well and the look on the doctors faces and his nurse’s face were clear evidence that my son was very sick and extremely critical.  I was told to call anyone that I might want to be there, because they did not know if he would make it.  My pastor came down and on April 2, 2009 I had him baptize Ethin.  On April 7, 2009 I was called by the hospital and asked to get there as soon as possible.  I was a block away and was there in his room within 7 minutes.

His nurse told me he was not doing good and his doctor came in and said set him up for surgery.  As I sat there with Ethin I began to pray and cry.  It was at that moment that I started demanding Ethin to fight that I needed him with me and that he made it this far that he needed to fight harder.  I remember very vividly telling him, “I love you and you are a part of me which means you have a lot of fight in you and now I need you to fight, because I can not live without you.”  those words have haunted me ever since.

Within twenty minutes a surgical nurse came to me and said they were ready for him downstairs.  I walked next to his bed and when the elevator opened his doctor came out squeezed my shoulder and I entered the elevator with my son.  We rode down and at the bottom they said that was as far as I could go.  I cried so hard I thought I was going to pass out as I watched them wheel him down the hall and through doors and I stood there until I could no longer see him.

I waited in the waiting room on the 5th floor for them to tell me he was done and hours later they did.  I went back to see Ethin and I was so thankful he was alive.  The next few days were slow going.  Finally they said they were going to extubate him.  They did and Ethin was placed in my arms.  I was so happy.  I left the hospital and went to get some sleep and about an hour later the hospital called me and told me they had to reintubate Ethin.  That his lung collapsed.  I went to the hospital I was so furious that it felt like every time we went forward we also went back.  Ethin had his fourth surgery to plicate his diaphragm on April 9, 2009.  From there everything was forward and back with intubations and extubations, but finally Ethin did it he was beating his CHD and was moved to moderate care and eventually to the general care floor in June of 2009.

June turned out to be a long month with weaning him off certain meds for pain and comfort.  He also had to be relearn how to eat from a bottle and was in physical therapy for his fine and gross motor skills as he had been on his back and in a laying position for so long.  Ethin did well with it all and was soon eating from a bottle and had just started learning how to sit up.

Back home our church had set up a benefit for our family and that was going to happen on June 27th.  Knowing I would go home for that benefit I began to set up things with the hospital so that while I would be home I would feel more at ease with leaving Ethin for three days which would be the longest I had ever left him.  On June 25th I made the three hour drive home.  June 26th I went and picked up my other three children for the benefit the next morning.

On Saturday June 27th I woke up with an awful feeling and called the hospital at 6:30 in the morning.  They said Ethin had been running low grade fevers, he was still teething, and they planned to start an IV on him.  I said OK and told them I would call a little later to check on him.  At 7am my children and I arrived at the benefit and I still could not shake the awful feeling I had so I called the hospital again.  They said nothing had changed.  I let them know I would call around 10am and that I would be on my way back to the hospital around noon and planned to arrive there close to three.

At 9am my phone rang and it was the hospital.  I will never for as long as I live forget this call.  His nurse said, “Jessica, Ethin has coded.”  I could barely breathe and I knew that it was all done.  I knew that I would never see him alive ever again.  I stumbled to the doors at the benefit calling for his pediatrician who was there the whole way.  Once I hit the outside I collapsed screaming and trying to breathe.  I tried to tell the doctors to put him on life support and keep him alive till I got there.

I was immediately put in a vehicle and driven towards Ann Arbor to try and get back in time even though I knew it would not matter.  At 9:45 my phone rang as I was in route to the hospital and it was his doctor our favorite doctor and his words will also always stay etched in my mind, “Jessica we have done everything we can.  We echoed his heart and did an ultrasound on his brain.  Jessica I am so sorry, but we have to call the code he’s gone.”  I just cried and collapsed there on the side of the road.

The rest of the trip to Ann Arbor I called friends, family, and everyone that I knew would need to know.  I arrived at the hospital at noon.  I ran from the elevator to the room where I knew he would be.  When I opened the door I just collapsed at the sight of my son as he looked nothing like the smiling boy I had left two days earlier.  He was intubated and had IV’s that I demanded be taken out.  Once they were taken out I gave him a bath, dressed him and carried him back to that room.  Once in that room the emotions flooded every sense of my being.  I held him, I told him how sorry I was, I kissed him, and eventually I even fell asleep with him.  I took him outside to the let the sun light shine on his face.  He truly was an angel.

People started to arrive at the hospital and everyone wanted to know what they could do.  Some people stayed outside the room some came in, Some helped pack all the things that were at the hospital and others packed what was at the Ronald McDonald house.  My pastors had made contact with a funeral home back home.  And a good friend offered to take me home for the night as I knew I did not want to spend another minute in Ann Arbor at that time.  At 6:30pm I finally made the walk with Ethin in my arms to his hospital bed where I laid him down one last time and my friends pried me from him as I knew I had to say goodbye.

I do not recall the ride home that night, but I do remember feeling like a part of me also died.  I held his things in my arms and through the night my friend would come in and wake me up asking me to drink water and then I went right back to sleep.  Sunday June 28th I woke up and was driven to the funeral home to make arrangements.  Once that was done I went right back to bed and to be honest I do not remember making many arrangements.  Monday June 29th I bought a cemetery plot.  Tuesday I spent with my other children and Wednesday July 1st I dressed my other children and we made our way to the church for the viewing.

Once at the church I felt as though I could not move.  I did not want to go in that building and see what was going to be before me.  My kids and I walked in and we had a very private service for my children one that was for them to understand what happened and for them to feel free to ask questions and get answers that they needed.  That evening was very long and I did finally break down near the end when I knew I had to leave him again.

I stayed with friends that night and slept very little.  Every time I fell asleep I would see Ethin healthy and then in that casket.  It was a nightmare.  Thursday July 2nd I woke up and got ready for the funeral.  I went and got my children ready for the funeral and I arrived with enough time to be there as others arrived at the church.  My best friend finally showed up and he walked with my kids and I into our seats.  I am not sure that I recall the funeral at all.  I mean I know things that were supposed to happen and I know they happened, but some things are very blurry.

At the end of the service my children and I followed the pall bearers out and watched them close the doors to the van his casket was put in.  I was helped into my best friends vehicle and we followed all the way to the cemetery.  Once there it was short and sweet I do remember asking everyone to meet me back at the church, but I needed a few moments to myself.  I got on my knees and just threw my body over that casket.  Finally I was helped up and I watched them lower him into the ground.

The rest of that day is a bit blurry I know I ended up in the ER from exhaustion.  The days that followed July 2nd I can not even remember.  And the year that followed was full of many painful memories and thoughts.  That first year of firsts never failed me as hideous reminders that my son was gone.  And when June 27, 2010 came it was as though I just assumed that all the hurt would go away too.  All that changed that day was that every first day of the first year without my son had inevitably happened.

It’s August 18, 2010 as I write this now.  I am not like I used to be, but I am learning to live in this life as a mother who lost one of her children.  I went back to work in April and found a second job in May.  I started doing more normal things this summer as I play on summer softball leagues.  I recently moved back into my own place and I even have started to truly live again.  My smiling now is more genuine and I find that even though I have bad days I also have good days.  I also founded and now run a non-profit organization in memory of Ethin.  It is a hard balance from time to time to know how much to hang onto and how much is OK to let go.  I was once told that it was a fine art and I am sure I have not mastered the art of grieving, but I have mastered the art of avoidance.

I am by no means the authority of grief, but I am the authority of my grief.  So when I have a bad day I know that it’s OK and I also know that I am on no timeline as to when I can no longer grieve for Ethin.  The truth is I will always grieve for Ethin, but my grief has and will continue to change.  Losing my son has changed every part of me and everyone knows that I am different now.  I have come to appreciate this life so much more and have truly taken time to be thankful to God for every blessing in my life.  I have no doubt that the only reason I am able to write this now is that God brought me to it and he has brought me so far from where I was.

Losing a child has been the hardest thing I have ever gone through.  I always wonder what he would look like and what he would be like.  I am very blessed with my other children and as the three of them and I have learned how to go on after such a loss it has brought us closer to each other and to God.  My children and I have faith and we know where Ethin is and even though he is not physically with us we are assured every day that one day we will all be together in Heaven forever.




I originally wrote this for Faces of Hope as a way to help other parents who lost their children, but when Stef let me know about her Every Heart Has a Story blog event I thought I would use it for this.  Our story has been a roller coaster and though it did not end the way I wanted it to; it truly is a story from my heart about my son who truly still amazes me to this day.  His heart led me to so many other amazing hearts and friends and family.  I wish that my story did not have an ending and in the physical sense it does, but in every other sense it does not.  Ethin's Heart Still Beats and this is evident in my every day life.  Please know that I was skeptical about posting our story, but I was urged to and so here it is......In it's entirity I suppose I could share the information that I am now the heart patient in this family so even my heart has a story that is unraveling before my eyes......

Jessica mommy to:
Ethin RaiLuc
Birthdate: January 9, 2009
Angel Date: June 27, 2009
Newaygo, Michigan
http://ethinsheartbeats.blogspot.com/
chdhlhs09@yahoo.com

Saturday, August 21, 2010

CUDDLES FROM THE HEART!!!

Funny how life certainly seems to slip by and time is never on my side!  I have needed and wanted to blog now for weeks, but there has been so much going on!  I will start with something I should have blogged about last month, but I totally forgot and so mow here it starts.

Cuddles From the Heart MI is starting to collect blankets for newborn through teenagers!  We give out the blankets in December and we would like to have 500 by then.  We are a bit slow in starting to ask for them as last year we began asking for them at the end of July and it is now mid August. 

Cuddles From the Heart (CFH) started two years ago in Iowa by heart mom Stefanie Jacks.  Last year she opened it up for any state to do.  In June I told her I would like to do it for MI and after Ethin passed away later that month I still said that I wanted to do it!  I am so glad that I did!  It was rewarding and amazing to see how much people truly care about others!  So here we are this year hoping to do the same thing.  Our goal last year was 500 and we did just over that.  Same goal this year 500!!!  We can do this!! 

What we need is new homemade or store bought blankets ranging from newborn to teenagers for boys and girls to give out at U of M Mott Children’s Hospital in December.  The blankets are a very comforting thing to many families while they are in there and sometimes just one blanket can make the hospital feel a little less like the hospital.  Ethin’s Heart Still Beats board members are all ready to go to Ann Arbor in December and as a board we decided that we want to do this so you can mail your blankets to
E.H.S.B
9172 S. Croswell Ave.
Newaygo, MI 49337
If you have any questions you can email me at chdhlhs09@yahoo.com

Alright now onto the life stuff……Wow I still can not believe that I am where I am when I look back to where I was!  So much has happened and so much has gone on that I am not even sure where to start to catch you all up.  I really do need to get better at blogging again I do miss it a great deal.

So very much has been going on it is all a bit overwhelming to me.  I suppose lets go with the good news…..We raised a couple hundred dollars at the EHSB family Fun Day.  We are now planning the Heart ball which is set to take place on January 8, 2010!!!  As an organization we are learning as we go, but so far it has been smooth sailing. 

In other news I am still working two jobs and I absolutely love both of them.  FYI fast food is not as easy as one would think!  And working at the Pub well that is easy, but I am very thankful that it is just one day a week.  Not sure I could handle working in a bar more than one night a week.  I also finally moved back into my very own place.  I am the proud renter of a one bedroom, kitchen, 2 bathroom, and a living room apartment!!!  Yep I am living alone again!!!  What a great step forward in this thing called life!

I am still playing softball and I have all the scars, scabs, and bruises to prove that I am a die hard player!  LOL I have turned into quite the 1st basemen!  I am enjoying playing it keeps my mind busy and off other things.  My dad plays on my team which is great to know that once a week I get to see him and my best friend also plays on my team and I see him a lot, but it is fun to play ball with him as well.

I also started a new hobby.  I like to go Geocaching.  I am maybe addicted to it as I have only been doing it for a week and I can not get enough it!  I have found 11 caches in 1 week and have retrieved 4 travel bugs and a geocoin!  I have also left 9 of the Remember Ethin bracelets in caches.  I will be setting out my own cache here in the next couple of weeks.  I am excited as one is being put out in memory of Ethin and the rest will be for CHD Awareness!!! 

I guess I should start being a little more honest and say that the last few weeks have been very tough and a lot has come up in three weeks that is hard for me to deal with at the age of 27.  I have been diagnosed as hypoglycemic and if I start eating right now than I might not ever get diabetes, but if I do not than I can expect to see my life go that way.  Also I just got done wearing a cardiac event monitor for 2 weeks.  I go to see a cardiologist the first week of September.  They are talking about doing a heart procedure called an oblation through a heart cath.  Wow I guess I just never thought that I would go from being heart mom to angel mom to Heart patient! 

So that is all a bit overwhelming, but all very curable.  Or in the heart issue is very correctable!  Still though a lot to take in for me. 

So my grief……Well I think grief is like a volcano just waiting for an eruption until the big eruption it just oozes out a little lava here and there.  I would be completely lying if I said that I was fine and life was normal, but I would also be lying if I said that life is crappy all the time.

The truth is life is crappy, but not all the time….And the truth is life is not fine and it is not normal like it used to be but it is fine and normal in a new sense.  I miss Ethin a lot and now that I am back to living in my own place by myself it hits me a lot more than it did when I was living with other people.  Somehow I think just knowing that I was not alone made a difference where now I am alone and I know it.  It gives me to much time to think by myself.  

I still struggle every day with this dance I do with my grief.  I am not sure if it is so much that I am dancing with it or seriously trying to dance around it and truly just try to be normal like I used to be and like everyone expects me to be.  The truth is also there is just not time to not try and be what I am expected to be.  And honestly sometimes I wish I could crawl in a hole and just stay there forever without anyone.  I at times wish I would not have gone back to work as it is really hard to work when I am having a bad day or an off day with my grief, but I know in order to be normal I need to do these things.  Besides I really do like my job and the people I work with. 
I am going to try and start blogging a little more and promise to have another blog post this week!!!  I miss you all and your encouragement, blessings, Jessica

Saturday, July 24, 2010

EHSB, Tigers, Heart Family, and an Effort!

Wow it has been just shy of a month since I actually wrote anything on here.  It is not that I have not wanted to, but I have been busy and honestly afraid to face my blog.  I will start with all the happenings and then tell you how I am doing and feeling.....

Well the fourth of July is my favorite holiday and it was a reminder that I do not ever get to share my favorite holiday with Ethin.  However I did have a good weekend.  I was able to go watch fireworks from a boat on Saturday the 3rd and then to Croton with my best friend on the 4th.  Here is a pic from the 4th....
So I have been working I seriously have an awesome job and I work with great people.  With all that being said my free time is a bit more limited than it used to be.  I am very settled into the house now and my room mate even planted a tree in our front yard in memory of Ethin.
Last Saturday we had an event for the non profit organization I started in memory of Ethin.  Yes that's right you read that right we are officially a non-profit organization!!!  Ethin's Heart Still Beats is in full swing!!!  We had a softball tourney here are pics from that

Me up to bat 
And me sliding...OUCH!!!
Overall the day was great and I could not have asked for a better day to remeber Ethin and have fun doing so!!
Sunday I went golfing for the first time ever in my life...Played the front 9 holes and scored a 76....I actually enjoyed it a lot and I can not wait to go again!!  However I do hope my game will improve!
Then this past Monday I went to watch a Tigers game but on the way down made a pit stop at Mott to drop off some checks and see a heart friend that was in the hospital.
Me giving checks to Dr. Russell at U of M Mott Heart Center
Visiting with Brittney Butcher Love this girl!!!  She is out of the hospital BTW
Also thought since I was in Ann Arbor I would go over to the Ronald McDonald HOuse and check out the leaf on the wall that was put in memory of Ethin
I think it turned out nice thank you to all who helped make this possible!
From there it was off to surprise Tommy!!!  Look out Comerica park here we come!!!  Tommy was shocked to see me and I think he was happy to see me as well what do you think?

Yeppers I love this kid!!!  He is post transplant times one year and doing great!
He also has the hook up and got my hat signed again!

 Tommy with Brandon Inge
There was another one of my heart buddies there too!

This is Christian he has HLHS
Also where there are heart kids there are also some of my favorite Heart moms!!! 
Every time the four of us get together we get a pic taken!!!  This is by far my favorite picture we have done!  In the back there is me and Colleen mommy to Tommy and in the front there is Karen mommy to Christian and Sandy mommy to Heart Angel Ethan .  I love these gals!
This game was very long and Tommy and I were pretty cool looking so people snapped pics!!
We totally were rocking out the game!! 
Also some people we knew from the hospital showed up!

This is Bethanie a nurse that took care of Ethin on 5 East and Regina his pharmacist!  So good to see them
Then the Tigers game went into 14 innings so we of course had to Rally cap!!!
I seriously had a great night and can not wait for August when I hope to see some of these same people at the stadium again!!!

So that leads me to reality....I seriously thought and had it stuck in my head that after it had been a year that I would feel a ton better and maybe not so miserable.  I have not wrote, becasue here it is>>>>>>>>>>I still feel like crap a lot of the time.  I mean I am happier and living again, but I still harbor so many of my feelings inside!  I still have guilt and all the things that come with the fact that my son is gone.  I miss him just as much today as I did when it happened.  OK I can not really even elaborate on it right now I am crying and just need a nap.  I encourage you to watch the video in my previous post....
Love to you all Jessica

Sunday, June 27, 2010

365 Days Later

The first year is over...The first year of every first day without my son is finally over.  A part of me feels beaten down and another part relieved.  I feel beated down in the fact that a seriously have went 365 days without my son and relieved that I survived 365 days without my son.  Blogging may now get back to a normal flow as I really have just not been in the mood to share how I was feeling or what I was going through as today was fast approaching on me and inevidably it was going to happen. 
So let me say I really never thought I would survive this first year.  However not only did I survive it, but I think I might have even started to live again.  For most of the first year I am sure I merely existed in a world that just never stopped and I did everything I could to just try to keep my feet on the floor.  I at times felt like my feet were slipping out from under me.  I was at times hard to get through to and I had many sleepless nights and to many tears to count. 
I was very unsure when this started a year ago if I would be here a year later.  I had many weak moments and many times thought about disappearing to the blog and CHD world.  However I opened my life to so many of you and truly felt it was the right thing to do to allow you to follow if you so decided.  Also some where through this I felt that maybe part of God's purpose in this would be to help other grieving mothers.  And to be honest I am very thankful that I had all of you to help me through this past year.  God carried me through and you all were a part of it.  Your words of encouragement and your support and prayers truly sustained me more than once. So to all of you Thank you from the bottom of my heart.
The rest of this post is going to be my reflections on the last year in a letter to Ethin.  I figure sharing it here is my way of sharing him and sharing it with him.
Dear Ethin,
  My sweet punk my angel I have missed you so much and this I am sure will not change.  No I promise you that it will not change I am sure that I will miss you every day that I am alive.  I never imagined that I could do this without you and I haven't.  Son you have been with me every second of every day.  Your strength and fight on this Earth gave me Hope and Courage to get through all of this. 
  I will never forget the day you were born and that cry that I heard.  There are moments in life that I think always remain a part of your daily thoughts and you my son are many moments that are part of my every day.  I truly never imagined all that your life would mean to me and so many others.  I am so proud of all that you are and ever will be.
  I would be lying if I told you that this has been easy.  It has not been easy it has truly been the hardest thing I have ever done learning to live without you.  It has been hard and is still hard to accept that you are not here with me.  At times the only comfort I could find in doing this was knowing that you are in a far better place with our Savior.  I used to think that there was no better place for you than with me, but that was selfish thinking and I am sorry for that. 
  I still love to relish in the memory of your sweet smile and your vibrant eyes.  I do still cry for you often, but that is part of being on Earth.  This Earth is filled with painful things and losing you was painful and still is painful. 
  Ethin I truly believe to this day that you were a very special gift from God sent to change my life and this world.  Let me tell you that I am proud of the fact that I know you have done both of these things.  Your life though it was not as long as I wanted was just the right length to make an impact larger than I will ever do in my lifetime.  You have touched so many lives and so many people and you continue to do that every day. 
  Loving you so much has always been easy, but missing you has not.  Some nights I still think that maybe when I wake up that this will all be a bad nightmare and you will be here.  I have thought over and over in my head of ways to bring you back, but it is not going to happen.  One day many years from now for me and seconds to you though I know that we will spend forever together in Heaven. 
  In the last year since you have been gone so many things have happened.  There has been a balloon release, a ball, an organization started in your memory and honor, proclamations and resolutions, a basketball game, and most importantly there has been a never ending love for you and the life that you lived.  You fought so hard and so many love you and think of you often.
  I want you to know that I am sorry.  I am sorry if I ever did anything that has disappointed you.  I am also sorry that I could not take your pain away or trade places with you.  Know that I would have in a heart beat if I could have.  I would have done anything for you.  As your mother it at times is hard not to feel responsible for what you went through, but I really just wanted to make sure I did everything in my power to give you a chance at life.  As your mother I am a selfish person that truly just would have done anything to make sure that you would always be physically with me.
  My plans for you certainly changed a year ago when I had to tell you goodbye.  I thought that I would see you play in the rain, but now when it rains I like to feel the drops run off my face as it feels like maybe that is your way of telling me it's OK to cry when I miss you.  Instead of allowing the wind to brush your face I feel you in the wind as though you are whispering I love you mommy.  Instead of looking at the stars with you I feel like maybe you are up there in the stars.  I truly believed you and "D" would learn to walk and talk at the same time.  Well I am sure the two of you talk and I find comfort in thinking that maybe you were there holding his hand as he took that first step.  Yes you still a part of the plans, but in a different way. 
  I may not be able to ever fully understand all that has happened and why, but I do know that you are always my son and I will always love you.  Wishing for another day with you is easy, but I know it would never be enough.  So until I get to where you are make sure to look both ways up there before crossing Heaven's street, find a good place fo us to play, smile every chance that you get, smell all the flowers, and know that I love you and always will.
Love,
Mommy



You are the sun that warms my face
The wind is your gentle embrace
You are the first star I see at night
The reason I still get up and fight
You are the beat of my heart
The courage I have to not fall apart
You are the whisper in the day
The reason I can not lose my way
You are the rain that falls in the spring
The hope that floats on an angel's wing
You are everything I ever hope to be
The best part of everything in me.
Jessica Twigg
6-27-10


Blessings,