^ShawnBears^ Journey with HLHS My Angel*

A long Day

2011-07-13T22:42:00.000-07:00

Well I have been a moving and trucking around today. Woke up and took my In Laws to the Airport as they are off to Vegas to Celebrate Joels Bday . I hope they have an awesome time, they deserve it . After that I went to see my ShawnBear . I miss him so much and I love being there with him even though I know his spirt is not there and he is in Heaven that is my little Safe Haven that I have no worries when I am visiting I feel so whole . I miss my ShawnBear so much . I want him back so badly. After that I went and got my hair highlighted and a trim so I can look nice for my first day of work on Monday. I am excited and scared at the same time . It will keep me bizy and get me outta bed because I have trouble doing that on a day to day basis. So I hope this is a step in the right direction . I really hope it is . After that I came home and dyed Julias Hair pink for her . Shes been bugging forever and I finally got the color for her . I also found out today that my brother who is about to have a baby in a month just lost his job. I am so worried about him and I m sure he is super stressed out . Especially now with a wife and baby about to be here . I m worried about them. I hope everything works out . I am keeping them in my prayers . Now Im just laying in bed hoping that I fall asleep fairly early cuz I am exausted . I love you ShawnBear for always and forever .

First Day at the New Job

2011-07-13T01:17:00.000-07:00

WELL TODAY I STARTED WORK FOR THE FIRST TIME SINCE MY SHAWNBEAR HAS PASSED AWAY . IT WAS JUST ORIENTATION BUT IT WAS SO DRAINING BEING IN A ROOM LISTEN TO SOMEONE TALK AND WATCH VIDEOS ALL DAY LONG . SO BORING . IM AM HAPPY AND GRATEFULL THAT I HAVE THIS JOB I REALLY NEED IT AND IT WILL HELP OUT ALOT . I BELIEVE THAT IT WILL HELP ME WITH MY GRIEVING . I TEND TO HAVE TO HAVE A REASON TO GET OUT OF THE HOUSE A GOOD REASON . MOST OF THE TIME I WILL MAKE EXCUSES WHY I DONT WANNA GO OUT OR DONT NEED TO DO SOMETHING . SO THERE IS SOMETHING GOOD TO COME OUT OF THIS . I MISS MY BABY SO MUCH AND I KNOW I NEED TO START LIVING AGAIN BUT DEEP DOWN INSIDE I DONT WANT TO . I JUST WANNA LAY HERE IN MY BED AND DO NOTHING. I ALWAYS LIKED BEING AROUND PEOPLE SO I AM HOPING THIS IS A STEP IN THE RIGHT DIRECTION. SO IT WAS A GOOD DAY I HAVE A LOT OF DEPRESSION INSIDE BUT I HIDE IT WELL. I JUST FEEL LIKE ALL I WANT IN LIFE I CANT HAVE AND I DONT KNOW HOW TO REACH OUT AND GRAB IT NO MATTER HOW HARD I TRY. THINGS CHANGE PEOPLE CHANGE AND ME I JUST STAND STILL . RELIVING EVERYDAY WONDERING IF I WILL EVER WAKE UP FROM THIS NIGHTMARE I CALL MY LIFE . SO MANY THINGS I WANTED AND NEW THINGS I WANT AND WANT TO DO BUT DO I HAVE THE ENERGY TO DO THEM THAT IS THE QUESTION. ONLY TIME CAN TELL I SUPPOSE . I MISS YOU BEAR FOREVER AND ALWAYS. XOXO MOMMY

2011-07-11T13:55:00.007-07:00

ve any of it .

2011-07-11T13:55:00.005-07:00

out. I wish I could b who I was before and I could just have my baby back . I'm not liking the new me so much these days :-(. I want so much n I can't ha

2011-07-11T13:55:00.003-07:00

my husband does to but it seems to me as though we r not connecting as much anymore. And I know we all grieve differently so I hope it all works it self

2011-07-11T13:55:00.001-07:00

Having a rough day today for some reason. I'm at the cemetary posting from my phone. I just feel so alone in my grief and I miss my baby so much. I know

The Beach Today??

2011-07-08T14:19:00.000-07:00

Well woke up really late this afternoon and I am kinda in a funk my back hurts. We talked about going to the beach last night but not sure that were going yet. HOpefully getting out of the house is always good. When I get out I seem to be ok sometimes. Anyhow I read some of my non profit book last nite and it has lots of good information . I need to get ahold of some people at CHOC next to find out about donations and see what I need to do . Hopefully they will let me be a part of handing them out to children
I really think this is a great idea and I really am excited to help other familys in the hospital. Well short post today but I will update again soon .

ShawnBears Heart

2011-07-07T11:51:00.000-07:00

I have decided to give back to children inthe Hospital and Familys that go through this. My son was an inspriration to me and I want to be a part of helping others. If it had not been for CHOC and all the great things they did for my son and our family. Things could of been a lot worse . A friend from my grieving group responded when I asked How I could keep Shawn Bears memory alive in giving back. Her response was perfect she said you should do a Teddy Bear DRive and when you have all the Bears have a special ribbon put on them that Says "ShawnBear" A friend for life . That is perfect but I also want to help in other ways to. I have picked the name now I have to figure out how to start up all this filing for the name to be permanant and doing what paperwork you need for a nonprofit bizness. I have a focus and something to keeep me a little bizy hopefully a lot bizy in the future. I love you ShawnBear forever and always . xoxoxo Mommy

One Day at a Time

2011-07-07T02:29:00.000-07:00

Well the Holiday is over and I am sure still not sure how I will ever get to enjoy another Holiday without my baby boy here . I miss him so much. It seems just unbearable at times . I do things to try and keep me bizy. Before ShawnBear passed I was a bizy mom going to school working and enjoying life. Now I sit at home and do just about nothing. I have taken some steps to hopefully help in my grief journey to start functioning again the best I know how . I have gotten a new job at WalMart I will starting orientation on Tuesday next week and hopefully start training soon after that and then off to working full time. Im hoping that this helps me to get out of the house and start socializing again even if its just a little bit . I keep telling myself small steps but they feeel like huge giant steps. I have a long journey ahead of me and I dont know whatt the future holds but I am trying. I went to the cemetary today with my oldest son Daniel and we cleaned up the holiday decorations, mowed the grass and Shined up his beautiful stone. I miss him so much. I also worked on my quilt tonite that I am making out of his clothes in memory of him. I do all I can to keep his memory alive.Doing things like this also helps me cope. I know I keep him in my heart but I want others to know and remember him also. Its only been 5 months and I feel like people (some family and friends) are already forgetting about my precious baby. I never want him to be forgotton by anyone. I wonder if in the years to come if anyone will even talk about him or the things they remember about him . I always willl and my husband also. I just want his memory to live on and on . xoxox Jennifer

Some thoughts on my mind

2011-07-02T00:07:00.000-07:00

Here comes the first holiday of 4th of July that I have to celebrate without my ShawnBear. To me now holidays are pointless if you cant spend them with the ones you love and Love ShawnBear more than I love my self . He was a part of me and when he died a part of me died with him. I know Im still here and I am broken . When is my time ? When do I get to see my beautiful baby again ? When will god call me home. I know the God and ShawnBear would want me to be happy but when you loose a child your whole world changes . Its like life stops and you dont know how to start again. I miss him so much. I am so broken inside I dont know what to do. He was my everything . My baby and now hes gone . I love and miss him so much. I have read books and talked with other moms and they say the pain never goes away but it does get esiar . I cant see that yet but I hope in time I will find my way. My life is falling apart and I am trying so hard to keep it together . Everyone has moved on and they ask me how I am or tell me how strong I am . If I told them the truth they would probbably lock me up in a mental hospital. So this past week has been for some reason extremly hard on me . Numbness is gone and reality is here . I dont want it . I think numbness was better in a fog not beliving . hOping that he was just going to come home even though he is gone . I miss him so much and I dont know what to do to make things better or even manageable. I do have good days but those days are filled with quilt because I want him here to enjoy them with me .

Love you ShawnBear xoxoxo Mommy Happy fourth of July my Bear U are Truely missed

Normal I think not

2011-07-01T23:51:00.000-07:00

Normal is having tears waiting behind every smile when you realize someone important is missing from all the important events in your family's life. Normal is feeling like you can't sit another minute without getting up and screaming, because you just don't like to sit through anything.

Normal is not sleeping very well because a thousand what if's & why didn't I's go through your head constantly.

Normal is reliving that day continuously through your eyes and mind, holding your head to make it go away.

.

Normal is every happy event in my life always being backed up with sadness lurking close behind, because of the hole in my heart. Normal is no matter how many or by what means we have children, there will always be one missing.

Normal is telling the story of your child's death as if it were an everyday, commonplace activity, and then seeing the horror in someone's eyes at how awful it sounds. And yet realizing it has become a part of my "normal".

Normal is having some people afraid to mention my baby.

Normal is making sure that others remember my baby. Normal is I will celebrate my child’s birth and mourn the death all on the same day.

Normal is r, everyone else goes on with their lives, but we continue to grieve our loss forever.

Normal is weeks, months, and years after the initial shock, the grieving gets worse sometimes, not better.

Normal is not listening to people compare anything in their life to this loss, unless they too have lost a child. NOTHING. Even if your child is in the remotest part of the earth away from you - it doesn't compare. Losing a parent is horrible, but having your child die is unnatural.

Normal is realizing I do cry everyday.

Normal is being impatient with everything and everyone because you are stricken with grief over the loss of your child.

Normal is a new friendship with another grieving mother, talking and crying together over our children and our new lives.

Normal is some days being too tired to care if you paid the bills, cleaned the house, did laundry or if there is any food.

Normal is avoiding friends who have been friends for years because the site of them and their children tears my heart in two and reminds me again of what I lost.

Normal is asking God why he took your child's life instead of yours.

Normal is finding excuses not to go to baby showers and birthday parties because you don't want your loss and sadness to overshadow anyone’s special day.

Normal is having to bite your tongue when people say stupid things because you know they mean no harm, they are just ignorant.

Normal is being avoided by people who know because they are uncomfortable talking about it. Normal is I NEED to talk about it. Normal is everyday finding the strength to get out of bed and go on living even though there are days you feel like you can't. Normal is when you do get out of bed you realize that today is one day closer to seeing my baby again. Normal is knowing that 80% of relationships will not survive the loss of a child and wondering if you will beat the odds.

Normal is blaming yourself and wondering if others blame you too.

Normal is I wouldn't give back my 3 years I shared with my child because sometimes love is so great that saying hello and goodbye in the same moment is worth it.

Normal is knowing I will never get over this loss, in a day or a million years.

And last of all, Normal is hiding all the things that have become "normal" for you to feel, so that everyone around you will think that you are "normal".

I love you and miss you Shawn Bear forever and always . YOu will never be forgotten. Love mommy xoxo

5 Months today

2011-06-27T19:33:00.000-07:00

Today marks the day that my ShawnBear went into Cardiac Arrest . They were able to revive him after 45 min but two days later he passed to multy system organ failure amoung other things we do not know . All of those unexplained things drive me crazy. I want to know why this happen when he was doing so well . I keep asking myself what could I have done . Why didnt I see this even though his cardio Dr said he was doing so well. I blame my self more than anyone else. Im his mom and I should of known. I had a feeling he wasnt feeling well but this was so outta the blue. In 2 days it will be 5 months since I lost my Shawn and although it seems like eternity it also feels like yesterday. I miss him so much and blame myself for so many things. When I think about him and the time we have I dont understand why the bad memories of me telling him no . Or stay here with Daddy while I go to the store overpower the good memories we had the few 3 years he was here with us . I felt like I was taking steps forward and feeling a little better lately but today I have not gotten out of bed . I miss him so much . I just want him back and I will not have any answers until I get to heaven my self. I am in a dark place today and just want to fall off the face of this earth right now . Yes I am venting I cant do it on facebook because then my kids will see it and they think I want to kill my self and thats not the case I just have trouble on some days coping with my loss Such a tragedy. I miss you bear

2011-06-24T14:36:00.001-07:00

get out of bed . I know the pain will never stop . I want him back now please :...(

2011-06-24T14:35:00.001-07:00

Just visited my Shawnbear at the cemetary . I miss him so much. I have visited everyday since he has passed with the exception of 3 days when I couldn't

2011-06-24T00:22:00.001-07:00

I miss my bear

I miss my ShawnBear

2011-06-24T00:02:00.000-07:00

In just a few days it will be 5 months since I lost my precious baby boy. Yesterday my son Daniel came home from Washington, where he has been living since shortly after Shawn was born . Now I have my older son home and my house should feel complete but it is still so emty. It always will be without my ShawnBear all these feelings are so overwhelming again . I know life will never be the same without him and I still cant figure out how to live without him I miss him so much. I just want to lay and be curled up in my bed all day every day. I know I have other children who need me and I have neglected them in regard to there feelings and how I should be with them . yOu think I would love and embrace them more but I am just upset that I dont have my baby. I want him back and thats the bottom line. I have never in my life felt such horrible pain. I am going to try and blog here everyday so I can track my progress and hopefully get some help from other that have been down this road.

Shawn Sellers passed away Jan 29th 2011

2011-04-05T00:29:00.000-07:00

I am still at a loss for words. I miss my ShawnBear so much. Shawn went into cardiac arrest on Jan 27th at home. The total down time for Shawn was 45 min. So the Drs and nurses were not hopeful that Shawn would make a recovery from this. Due to the lack of CPR administered and the neglagence of the EMT's who responded stopped CPR because they picked up a Rythem from his pacemaker and we told tthem multiple times he has a Pace Maker. Shawn passed 2 days later at Childrens Hospital due to complications from his arrest =((((. I still cant believe he is gone and at most times dont know what to do with myself. I love you ShawnBear Forever and for Always.

shawn at Sea World San Diego

2010-07-27T19:15:00.000-07:00

Shawns doing well. I havent posted in a while because things have been uneventful, which isnt such a bad thing . Thhis is a picture of Shawn with his older brother Daniel

Shawns Pacemaker Surgery

2009-12-30T13:38:00.000-08:00

Shawn has made it through his pacemaker surgery and is doing excellent. This surgery was a little tougher on him being 2 years old just a few days ago so he was more aware of what was going on and he just wanted to go home. But he is now 2 weeks post op and getting back to his normal little spoiled self. Finally sleeping through the night without waking up crying and that is a relief for mom and dad. Shawn also had a great christmas.

Pacemaker Update

2009-06-27T00:32:00.000-07:00

Shawn is doing well. We have had several cardio visits and a few holter monitors since my last post. Not to mention a stay a CHOC for a few days in the CVICU. The month after Shawns last RSV shot he got it. We had been battling colds all winter and didnt get RSV then when we think the coast is clear BANG. He tested postative for it =(. So we got to see alot of the nurses that havent seen Shawn since he was 3 months old, because our last surgery was at CHLA. It was nice to see them I just wish it would of been on better circumstances. During that hospitalization they decided to put him on a heart medication called Amioderone to try and help with his rythem issue. Well he was on it for a month and a half and they did another Holter monitor and cardio Dr said there were no changes so they took him off that med and will repeat the Holter in one month. So that is where we are at for now and Shawn is still his jolly ol self. Cranky on some days and draging like he is so tired some of the time, but mostly just being a kid. I will update again soon.

Pacemaker Update

2009-04-14T17:38:00.000-07:00

So we ended up not doing the pacemaker as our cardio doc had planned. When we got to CHLA to meet with the Dr about it and do preop labs, they decided to wait because they are unsure if Shawn really needs it. Its a month later and we just repeated a holter monitor this weekend so we will know the results this friday at his cardio appointment. I think they might be trying to hold off so they can put it in at the time of the Fontan so I am thinking that might come sooner than later. The docs over at CHLA seemed to be concerned about opening him up again in such a short period of time. Because of his tricupid repair he has had 3 open heart surgeries in only a year. I hope that we can get some more answers this week at his cardio appointment to put my mind at ease a little. Other than that Shawns doing great and being a normal little one year old that has almost mastered walking now. I am posting a pic from easter with this update .

Shawn walking

2009-03-15T23:46:00.000-07:00

Shawn walking

Pacemaker Surgery

2009-03-15T23:30:00.000-07:00

So the doc's from CHLA called and we will be going for pre-op work up's and to talk with the surgeon tomorrow morning and then surgery on Tuesday for Shawns pacemaker. I feel a little better about the whole thing now hearing from all the great moms in my group and that there kidos seem to do so much better after the pacemaker is put in. I am so scared for Shawn this time because he is so much older and is more aware of his surroundings and whats going. I feel so unprepared for all of this to. Thinking that we werent looking at surgery until April of next year. I will post an update after surgery . Everyone please pray for Shawn .

Cardio Appointment

2009-03-11T08:22:00.000-07:00

Shawn had a cardio appointment yesterday. Well let me start by saying that we had a Holter monitor test done in the end of February because when Shawn was in the hospital last time his cardio doc seen something on the tele that wasnt normal. Well the results of that we got today.
Shawn will have to have a PACEMAKER put in because when he was sleeping his heart rate went down into the 30's. When I found out this is another open chest thing that he was going to have to go through I was saddened. Not just once but every time they need to replace the wires as he grows because his anatamy doesnt allow them to do it any other way. So there are looking to do the surgery as soon as they can get him in. My cardio doc will be calling today with the details. I will post more soon.

Shawns 1St Ambulance Ride=(

2009-02-07T21:04:00.000-08:00

Last night was our first ambulance ride. I have always known whenShawn wasn't feeling well I could get him to the ER on my own.Yesterday Shawn woke up with a little fever and I thought since hewas teething it really wasn't anything to worry about. So I gave himsome Motrin and he was fine for about six hours. He woke up from anap and had a bad fever, he was hot to the touch so I tryed coolinghim down in the sink with some luke warm water. While I was doingthat he started shaking and his lips, hands and feet started turningblue. Well this was a very dark blue some blue I have seen before andits not concerning .So I instantly called 911. When they got therethey started oxyagen and got him to the hospital. The chest xray wasclear and no RSV =). They say that he probably has a VIRUS. they cannever really tell what it is .My biggest concern is that they seen his heart missing a beat andthey have now done and EKG and the put him on a halter monitor. Hasthis ever happen to anyone before or something similar with themissed beat or halter monitor? I have heard a few people talk abouthaving one but not why or what the outcome was . thank youShawn seems to be doing ok and is in good spirits so hopefullyeverything is ok . I will post again as soon as I know anything

*^ShawnBears^ Journey with HLHS *My Angel*

A long Day

First Day at the New Job

The Beach Today??

ShawnBears Heart

One Day at a Time

Some thoughts on my mind

Normal I think not

5 Months today

I miss my ShawnBear

Shawn Sellers passed away Jan 29th 2011

shawn at Sea World San Diego

Shawns Pacemaker Surgery

Pacemaker Update

Pacemaker Update

Shawn walking

Pacemaker Surgery

Cardio Appointment

Shawns 1St Ambulance Ride=(

^ShawnBears^ Journey with HLHS My Angel*