Loss of an Adult Child

[kalimac]

All of you with grandbabies and dear little ones in the family . . we have only one to dote on . . and he is now five . . my little nephew. He adored my son, Nathan . . followed him around . . so cute.  But I echo what Terri said about wishing her daughter had had a child . . Nathan, too, had cancer. He was diagnosed at 17 and was given the talk at the hospital about chemo, radiation and treatments would leave him possibly infertile. Poor guy was so embarrassed at the time . . especially discussing all this in front of his mother. And, than last year right before he was to do a stem cell transplant we decided once again to 'store' samples just in case he ever wanted to be a father.  At the time the only thing I could think about was that he would probably never live to see that day anyway, so I barely paid attention as we were fully concentrating on trying to save his life.  But, now . . I do think about it  . . what if . . so it seems that I mourn not only the loss of my son but any future generations that he might have fathered . . I do have two other adult children, but neither seem interested in settling down and raising families. So . .for the time . . it is just my young nephew who I get to hug . .when he lets me.

I, too, work in a school. I am not teaching and am not sure that I will do that again. I work as an Educational Technician in the Library . . very low key. the Kids are great. No planning involved . . just sorting and reading books to kids at leisure or going on the computers. Pretty ideal for me for the past three years and now . . as it has kept our insurances going and allowed me unlimited amount of time off whenever needed. Maybe some day I will return to teaching in some capacity (taught library and computer skills to K-8th grade) . . but not now . . I'm just not ready.

A problem that I seem to be having at the moment is that my husband wants to sell our house . . and downsize . .says its too big and expensive. However this just about puts me into tears at the very thought of it . .because I see Nathan here . . everywhere I turn. the thoughts of selling the house makes me feel that I will be losing him all over again. I know that this is not rational . . but I can't help it. I am afraid I will be just miserable if we go ahead with this 'plan' . . my husband and I are not on the same page with this. I don't think he sees this the same way that I do . . and I've told him many times already that I can't even go there with this way of thinking right now. Blarg. I don't get it. :?

Patty

[ericasmom]

Sherry, ERica died one month after Davy, on July 14th 2003. We are connected by time you and I. Sad kind of connection, but i think they might enjoy one another's company. This was her fifth heavenly-birthday.

Patti, tell your husband you simply are not able to even think about that right now. If I am correct, your loss is very recent. I do get everyone mixed up still, but it seems you are new on this journey. I reacted the same way when my husband spoke of moving. Eri did not grow up in this house, this is a second marriage, but she did live here for 5 years. More importantly to me, I just could not stand anymore change. Could not even entertain the idea of boxing things up, or finding somewhere else to live. I love where I live, and while it is too expensive, we will have to deal with it as one of my dearest friends lives next door, and another good buddy lives 4 doors down. Both of these women have children that know my daughter. I live 3 blocks from the forest preserve which I take great delight in and I am a 20 minute train ride from downtown Chicago, or a 20 minute drive. NO< I don't want to leave this place. But do ask your husband to please listen to your heart right now. It is not the right time to even think of changing such a huge piece of your life, not now.

Love,

Dee

[heathershope]

Patty...I understand completely, we have been through that too.  DO NOT make any decisions in the first year if at all possible.  I cannot stress that enough.  My counselor told me that and I share it with you.  Our house is not HUGE...3 brms, 2 bth bi-level standard living, but for just my husband and myself it doesn't seem sensible to keep it and pay the larger pymts BUT....I also see Heather in this house.  She died in this house, we built her bedroom/bath/living area in the basement  to her specs and her decoration choices so she could have her space and maintain some indepence as she was dying. We have a tree that her first boyfriend planted in our yard right after she died, a tree planted for her by my husband and myself and a memorial garden worked on by the family and her fiance.  The thought of leaving this makes me feel like I would be leaving Heather.  People have said the memories go with you, the house is just a thing... but to think of someone else in her room or sitting drinking coffee on the deck looking at her garden, NO.  Maybe someday, but not now.  If you are not comfortable with it, WAIT if you can to make a decision. 

You are so new in this process, as am I, but I am almost at 11 mos and I can tell you I have changed my mind about so many things, big and small things, over the course of this time.  I almost quit my job at least 5-6 times, almost sold Heathers car only to decide I had to keep it for myself, almost moved out and left my husband a few times in the heat of an arguement that just happened to coincide with a particularly bad day I was having....you have very little rational thought capabilities at this time.  It takes all your energy just to survive, let alone make life altering decisions.  I thank God I listened to my counselor.  Your mind is a jumbled whirlwind of nothing while you struggle to just get through the day.  If I had acted on my impulses I would have already made some horrible mistakes.

I don't mean to sound so forceful, I just hope you and your husband take things slow so you don't regret it later.

Dee said it more sensibly, as you can see I am almost a little panicked for you.  It hit a nerve I guess.

My warmest thoughts and prayers are with you.  I am so sad as each new person begins this journey and I know it is a little more raw for you right now.

Terri 

 

[briansdad]

Patty,

How well I understand how you feel about moving.I was hurt by something much smaller scale but it hurt deeply never the less. I came home from work one day and my wife have taken all of brian's clothes out of his dresser and put them away so my daughter could use the dresser.She didn't know that I would still go down stairs and go through his things just to try and feel him still.I find it hard to get rid of anything he had so i can imagine how difficult moving would be.I hope you can work things out.

Greg

[summergirl]

It has been a busy weekend with Tavian so have not been on BI - amazing how much you miss when you are not here for a couple of days.

Bonnie - I am honored that you want to keep reading my posts and watching Tavian as he grows - I am sorry that you have no grandchildren but if I lived close to you I would "share" Tavian with you, it would not be the same for you but I would. When Jessica told us she was pregnant I spent two months trying to talk her out of it as she "was too young, too much to do with her life, so many things places to go and so much life to live" but God had other plans and I am forever grateful that for once my Jessie did not listen to me - having Tavian has been a two way street for us - on one hand he has been our savior many times over and the love we have for him cannot be measured - on the other hand it is scarey at times as I am 51 and he is only in kindergarden so we have alot of years to go - football, baseball, soccer, the "teen" years and so on - I tell my husband he may be pushing me in a wheel chair but I will be there for everything he does!! He has Jessie's fingers and most definitely her personality and those beautiful eyes and while he does not replace her we are blessed to have a "large part" of her with us. It has been a 2 way street for us - on one hand he is the love of our lives and on the other hand it is hard to be mi-mi/mommy after being just mi-mi for 4 years but it is worth every moment spent with him - he is asleep now and looking so innocent he pulls at my heart.   The picture of Jason in pre-school is so precious - God Bless you. If you don't mind me asking what type of heart disease did Jason have?? Just wonder as Jessica died from a heart problem also. God Bless you.

mamabets - total understanding of the things we cannot do - Jessica loved watching American Ido and she would call me each week and say "mom, are you watching American Idol because it is so funny to see these people who really think they can sing and they are horrible" - I could count on that call every Tuesday nite - now I do not watch it. I have the last book she read and I remember her telling me it was amazing, I have it on my night stand and hope to read it someday. Hard to make her most favorite meal but have to for Tavian. So many "I cannot do these things" in my life but am finding that some are a must such as laughing - I do not feel the guilt quite so bad anymore.

Trish - beautiful video - no other words to express it.

Terri - how was the butterfly exhibit? I was so happy to read that as I call my Jessica our butterfly - all summer long butterflies fly around and always land on Tavian's hand or my husbands shoulder and they just sit there - long enough for me to take a picture of it. Twice when Barry and I were on the deck talking about Jessica a butterfly landed right beside me and stayed there for almost 5 minutes - I cried.

Trudi - Miss Jeya is so beautiful and I am so glad "grandma" got them for an overnight stay - snuggles and funny faces so good for our wounded hearts. You asked if "grandchildren are the connection we need to our children or another soul to bring us home when we are lost" - I believe it is both. Tavian is definitely the connection I need to Jessica and he also brings me back when I am lost and am not sure how to continue. For example - today he was in a mood and nothing seemed right for him and he kept getting angry at me until I started to cry from fustration - he came to me and said "mi-mi don't cry, I am sorry and if you cry it makes me cry" at which time he began to cry and here we were in the middle of the kitchen sitting on the floor hugging each other and crying!! His innocent words and those huge tears falling down his cheeks brought me "home" to what it is now. I hope that makes sense.     Your check list is all about me!! I can say yes to all - you are amazing. God Bless you my dear friend.

I was born and raised in Iowa so understand those who live in the mid west - it is a long way from New York and it is like going to a retreat when I visit my parents farm. I miss it some days but can never leave here as I can never leave my Jessie behind - need to be near her.

Peace be with all of you here my friends. Kathy

Jessica my love - In my dreams I will always see you soar above the sky, in my heart there will always be a piece of you for all my life - I keep a part of you with me and every where you are - there I will be. I love you my daughter - mom 

 

 

[heartbeataway]

summergirl,

Jason died of ARVD/C - his first manifestation was sudden death. He never knew.... very rare disease and even more rare to have no symptoms before death.  Still can't believe this happened!

He was camping/jeeping with friends. He had gone back into the woods in the evening to help someone having trouble with their jeep and then sat around the campfire until almost four in the morning.  One of his friends went into the motorhome in the morning to get a skillet to get breakfast started and Jay sat up on his elbows and said good morning.  He didn't come out for breakfast and when they went in to get him, he was gone.

Still can't believe it .............

[mikesmum]

Bonnie - So sudden, out in the world he obviously loved.  Absolutely nothing so say, but I feel your heart breaking in your story.

Patty - Not to put too much pressure....but to your dear other half, hold off.  I guess I am blessed that while my home holds many memories of the last weeks of Mikes life he had been out of home for about 9yrs.  

Mal has wanted to sell and change jobs for the past 8 months.    Looking to downsize our home and find a job in the country.  Quieter life in a one horse town.  I have roses planted in a garden for Mike and his Nanna, but I know they will would come with us.

But I feel my heart ache at the thought of not being close to my grandbabies and their parents..........I feel like I have lost one part of the trio and want to be close to Steven and Melissa.

I have Miss Jeya overnight again this week.  I seems that I have more life left than I thought....

Kathy - It really is a two way street.......There is envy that you have Tavian, but then there is awe that you have been intrusted with the upbringing of your grandbaby.

As for the innocents of the grandbabies...Zak was camping with this parents this Easter.  He was introduced to some other kids, one named Micheal.  Without so much as a blink he said....."We had a Micheal - He died", he then continued on his way.  Steven was gob smacked....but as he explained....."Mum he said what he knew to be true".    Gotta love him........

Greg - Such a beautiful grandbaby - how do you manage to do anything while being wrapped around such a precious little finger!  

[mikesmomrs]

Patty:  my husband and I are in the process of downsizing...it has been so very difficult many times, and yet, I know that it is the right decision.  However, we didn't even consider it until at least a year had passed.  then, all of a sudden, it seemed right.  And, when we went looking for a new place, we looked at quite a few locations, but none seemed to "fit."  Then one day, we were out re-looking at a place, and coming away with that "not quite right" feeling, I had a sudden thought and remembered a place we had driven by many years before, when we first came to this area.  I told my husband 'let's drive out there, just to look at it, see if it is something to think about."  At the time, I didn't even know if there would be any place there for sale.  When we got there, we mistakenly went in the "back way."  As soon as we turned the corner, in the very first house on the very first street, there in the driveway, sat a red, vintage volkswagen bug.  (a little background here: one of Mike's favorite things to do throughout his life, from when he was about 5, was to do the "punch buggy" thing...meaning, if he saw a VW bug, he would tap you and say "punch buggy red (or whatever color), no return." ---meaning you couldn't tap him back on the same vehicle---  He did this right up until the very last time he went outside...just two weeks before he died.   It wasn't until a couple of months after Mike died that I began to realize that whenever something came up that was "significant," I would see a red vw within moments of it happening, whatever it would be.   One such moment that comes to mind is the first trip his sister took to Fenway Park for a ball game...Mike was always trying to get her to be a Red Sox fan, and she always said "no way, Mike, watching baseball is like watching paint dry...I am not interested."  Well, the very first time she finally went to a game, last July, just as we pulled out onto the main road from our house to drive to the game, a red VW bug drove by.   Another time was when we finally went to Mike's favorite restaurant, a little Chinese place tucked away in a tiny strip mall, we went there to celebrate his birthday, and I cried practically all the way there...but when we got there, there was a red VW bug, parked right there in the parking lot, waiting for us.   There were/are many other significant times that one just "shows up" and I could likely write pages about it.)   But, when we saw that red VW sitting there in that housing area, we just smiled, and of course, the "exclamation point" on it was that it was a vintage VW...his very favorite.  As if to "seal the deal" when we took the first picture of the house we wound up looking at in that area, it had been a very cloudy day.  When we developed the picture, shining down on the for sale sign in the front of the house, was a ray of sunshine...and we hadn't even noticed that the sun had come out when we took the picture. 

My point here, after all this explanation...sorry for the long story...is that when the time is right, the time will be right, and you will likely know it.  But I agree that there really shouldn't be any major decision made or entertained until at least a year has passed...

One thing that was said to me here, and I apologize, but can't now recall who said it, but they said that when/if we move, we are leaving behind a shell, just like Mike left behind the shell of his body when he left...yet his spirit soars everywhere, and his spirit will come with us wherever we go...it is not lodged only in plaster and paint and wood...it is everywhere and will be everywhere.  I remember that often when I start feeling anxious or worried about moving...he is with us, everywhere.

love and peace,

carol  mikesmomrs

[bigmikesmom]

Carol mikesmomrs,

that is a beautiful story. It made me cry. How amazing is that about the red volkswagon and the ray of sunshine in the pic. you are truly blessed to have such signs. God Bless you!

Patti-BigMikesMom

[bigmikesmom]

Betsy-mamabets,

I am thinking about getting a mini-daxson. Mike always would play with one at the pet shops. I found a beautiful kittle one in n.y. My husband doesn't want any more dogs. We had one always but we had to put our golden to rest in jan right after mikey's accident. Do you think it would be too much for me right now or it would be good? I know my husband would love it.

Patti-BigMikesMom

[4everjoeysmom]

Patti, I know your message is to Betsy, but I can't help chiming in....

The November before moving here the following May, I had to put down my precious Boxer, Grtechen after a battle with lymphoma.  I was heartbroken.  At 3 months of arriving here Joey died, and I was shattered.  The day after we returned, having been away 2 weeks for the memorial and time with family, etc, I just didn't know how to cope with anything.  I was still numb.  My husband went out and found the most precious little shihtzu.  He took me to "show me something", and then asked me as I held that cute tiny puppy in my arms, "do you want him?"  Of course I exclaimed yes.  I named that puppy JoJo, after my Joey, and he has been the bestest little buddy in the world for me.  He has licked my tears and stayed very close to me through the darkest hours, as if he senses my heart to the tiniest detail.  He's absolutely amazing, and I will never regret having him.  I love saying his name, and I love how his personality reminds me of little "Joey" characteristics.  He truly is "My Dog", and I just can't imagine him not being here with me through it all.  He brings lots of laughs and smiles now, which I never thought I would do again.  In fact, he sparked my first smiles and laughs after losing Joey and returning here.  He saved me from complete and utter lonliness and despair.  You have to do what you feel is right for you with regard to getting a new little buddy.  But I for one can vouch for the HUGE BLESSING mine has been.  I have since adopted a mini schnauzer into my family as well, and she and JoJo are best of friends (when JoJo isn't in my lap, of course!)    

Hugs, Claudia

 p.s.  I attached a recent picture of JoJo

 

[stephysteph13]

Claudia,

I see your online. I dont know what to do anymore. I miss her so much! mothers day is killing me! i want it erased from the calender!

ughhhhhh

steph

[summergirl]

Bonnie - I am so sorry. Jessica also passed from ARVD!!! The difference is that she started having symptoms when she was 16 - first doctor told us she had pulled muscles in her chest. Two years went by with nothing and then at 18 she had a real bad spell. We took her to the emergency room and they did an EKG and put her in ICU and the next day transferred her to St. Francis Heart hospital - they did 5 days of tests but nothing was ever determined. No one ever suggested medication and the final word from the cardiologist at St. Francis was that it seemed to be some sort of virus that went dormant and then would reappear whenever and we really had nothing to worry about - she was young. Another couple of years went by and she had one more small episode in which the emergency room doctor said there was nothing wrong with her, the EKG was fine, she could go home. Tavian was born and all went well and nothing untill 2005 when she had two episodes and same thing from the doctors - nothing wrong, she can go home. I remember one time I asked the doctor why they kept telling us nothing is wrong yet she still has the severe chest pain, trouble breathing and had passed out twice and they said they had reviewed her chart and discussed it and could find nothing wrong. I asked if she should see a specialist and they said we could but it probably would show nothing so it would be a waste of time and after all she had been through major testing at St. Francis and they found nothing so it was probably anxiety!!!   And then the fateful nite when she went out to dinner with friends and then they went to a local hangout for a drink, Jessica went to the restroom and after a while her friends noticed she had been gone for some time so they knocked on the door and no answer, one of the girls looked under the door and they knew Jessica was lying on the floor as they could see her hair. The owner broke the door in and called 911 but it was too late. All of my friends were on the ambulance that night as we are a volunteer fire department and the place Jessica was at is in our district. I talked to each of them and they all said they tried everything even though they knew it was too late but they loved her for me all the way to the hospital.   I have had many days of guilt for not making her see a specialist, for believing the doctors knew what they were talking about. I know it is a very hard disease to detect and it was even harder just a few years ago but I still feel so much anger that no one ever found it. We were told that even had she survived she would have needed a new heart. Why did I not follow my instincts and make her stay at the hospital and have a heart specialist come to see her!!!  WHY? Same answer - it would have made no difference in the outcome.

You are the only person I know who has lost a child to ARVD and I feel your pain so much. One minute Jessica kissed me good by, said I love you mom and oh, she looked so pretty in her new outfit she had bought and was so happy to be meeting her friends for dinner and then the next thing I knew I was answering the knock at our door.

Big Hugs to you - Kathy

[mikesmum]

Kathy & Bonnie - Really had no true understanding of what ARVD was so I have been reading from www.arvd.org  as well as Johns Hopkins website on ARVD. .  (Johns Hopkins and I go back to the days when my husband (no longer married) was diagnosed with adult hydracephelus/aqueduct stenosis).

Diagnosis eludes many of the traditional testings, yet with Jess they had her early enough - Being young fit and active is one of the 'criteria" for this condition'.  The fact that Jess was young may have prevented the appropriate cardiac workup that would identify the problem.  Especially if she presented with symptoms  of chest pain. There really is no pre exisiting illness that points to ARVD, the sudden death is the usually the first sign.........where do you go from there?

For both of you -  nothing on this earth would have changed the outcome.....sad but true.  ARVD takes the young, suddenly with no real warning.....

Know your babies are no longer prone to ARVD  - hopefully they will be speaking with 'the manufacturer' about the problem and he/she/they will either rectify it or pass to the mere morals the wisdom to identify and deal with it better........

Patty - "punch buggies" - another brillian memory floods the mind and tears fall.......but with a smile now............

Take Care - Trudi

[heartbeataway]

Kathy -

It's wierd but for some reason I've been drawn to your postings and your daughters picture.  I became part of an online ARVD yahoo group for awhile after Jason's death. I did extensive research and I learned a lot.

After we we told the autopsy results, we couldn't find anything online that gave us in laymans terms what the disease meant.  We called my husbands cardiologist. He said he wanted to see us right away.  We went in and he explained the disease and I was put through a battery of tests.  There are specific protocols for even EKG's when it comes to ARVD.  A regular EKG or an untrained eye will not pick it up.  We asked what it was like for Jason ........  he said that it was quick and pain free.  He just went to sleep basically.  If he had symptoms it would have been fainting spells or arrhythmia's.  He never had either. 

Jason's heart tissue was donated to ARVD research. We hope to have a fundraiser his next birthday to raise both funds and awareness.  The only thing Jay had that was unusual for his age was slightly elevated blood pressure. He wasn't on any medication.

You need to have yourself and your grandson tested.  If you need the protocol's, I'd be happy to send them to you along with a specialist in Arizonia that can review test results for you to ensure accuracy. Folks in their sixies have been diagnosed for the first time ......... it's usually young, seemingly healthy individuals but not always.

I'm sorry that we have this in common ...... that we lost our precious children .......that this disease exists ........  

When we went into the cardiologist.  He was listening to my heart. I ask him if he could tell it was broken. A tear slipped down his cheek .........

Love!  JasonH'sMom, Bonnie 

[summergirl]

Bonnie - I too have been looking at Jason's photo and as I read your posts I had a feeling but nothing I could explain. I too tried to find ARVD on line and nothing that I could even remotely understand. Jessica's cardiologist told me that when Jessica was 18 (almost 11 years ago) that there was no test they could do then that would have found it - today there is and I have a hard time understanding that. We have had Tavian tested and he is fine but must go back to his cardiologist once a year to have a check up. We have not been tested as I did not think it necessary because of our age (I am 51 and my husband 52) but now I will call the cardiologist this week to set it up to have us both tested - thank you for enlightening me. Jessica had fainting spells 3 times, she had arrhythmia's, severe chest pain and diffaculty breathing - but they were so few and far between that we believed the doctors to be right!! How can you be in a heart hospital for one week and have tests done every day until you are black and blue and not one cardiologist know what is wrong?? She seemed so healthy in so many ways and only those few episodes were any sign that something was wrong - how foolish were we??? We were also told that Jessica did not suffer and it was quick and painless yet I often wondered if I should believe them about anything now - I believe because I could not stand to think that she called my name or Tavian's - and I was not there for her.

I have been thinking about a fund raiser to do in Jessica's memory and was going to do one for a place here called "Camp Good Grief" - it is for children who have lost a parent or sibling and they go to the camp for a week - they interact with other children and counselors are there for them. Now I am wondering if I should do something along the line of what you are going to do for ARVD?? So many people know nothing about it and they need to . It took me a few minutes to catch my breath after reading your posting on what happened to Jason - you are the only person's "I know" that have lost a child to this disease!!

I am so glad I have found this site and all the wonderful people here. It is amazing to find so many "alike" situations - people who experience not only the pain, sorrow and grief but also having lost a child in an exact way. Thank you so much for sharing your pain with me - I am sure Jessica and Jason have found their way to each other as we have here. How I wish we did not have to do what we do but so glad to have all of you here.

I will take any information on ARVD that you are willing to share with me - let me know and I will give you my address or whatever you need.

God Bless you and all who are here on this journey of broken hearts. Kathy   

[summergirl]

Patti - thanks for the memory of "punch buggy" - as Trudi said the tears fall!!  Kathy

[wyomingsal]

Carol,

Funny memory about the punch buggy.    My son Joshua had a different version.  He always said, "slug bug, no backs...you owe me a soda."  My 4 year old saw one today and said...that reminds me of Joshua.  We all think of Joshua when we see vw bugs. 

Sal

[daveydow1]

Mikesmomrs,

My husband and I also went through the same thing as you, regarding when

and if we should move/downsize.  It just didn't seem right, until 4 yrs. had

passed since our son, Davey, died. We kept looking and keeping the idea

in our minds, and finally the time seemed right.  We moved, and have no regrets.You are so right when you

said that our children are not part of the plaster, paint, and wood of a house. Their

spirits are with us WHEREVER we are, for all time. Making a move is a big

step, and each person has to decide, by their intuition, when the time is

right. I still believe that all our children are friends in heaven, since we here

at BI are all friends on the same rough road.  Peace be with you.

                                       Daveysmom,   Sherry

 

[heartbeataway]

Kathy,

Forward your address to me via my email and I'll put a package in the mail to you.

I like the idea you had about the childrens camp. I think you should follow your instincts. 

I'm glad I found BI also. I was on another site and it just wasn't right. I left and almost left online "grieving" altogether but then I happened on this site ....... glad I did.

[align=center]Jayhawks won the Final Four tonight!!![/align]

[mikesmomrs]

In Oct of 1999, Mike had his very first grand mal seizure.  It began when he was in the middle of the road, in a traffic circle, crossing.  He somehow made it to the other side and seized, there in the driveway of a gas station---ripping away skin from his knees, his arms, the side of his face, as a result of him hitting the ground full force.  When a person seizes, they don't "fall down" or crumple like in a faint---they fall forward, full force, all their weight, onto whatever surface is beneath them.  Their wounds are a product of whatever that surface might be…in the case of a gravel/concrete driveway, 5 minutes or so of rubbing your skin on it uncontollably, dressed only in a pair of shorts and a t-shirt, can produce some ugly wounds.   And it did.    After CT's and an MRI, we were told that the seizures were likely a result of a childhood trauma to the head---that "there really was no way of knowing for sure," and that "it wouldn't matter anyway."   This began a six-year history of epilepsy, or so we thought/were told, treated by medication.  When Mike started having severe balance, coordination, and thinking problems in March of 2005, we thought it was medication side effects.  His doctor at the time "didn't have time" to see him and set an appt for the following September and would "call us if there was a cancellation before then."  We also at the time thought that perhaps some of it was being caused by stress, as Mike had recently gotten married, they had a baby, and he had just started a really demanding, hard work job---and was in a “trial” status for permanent employment.    As Mike got worse over the next month or so, we scrambled and finally found a neurologist willing to see him the next week.  The morning before his appointment, he had a grand mal seizure from which he did not recover enough to walk, and we had to call an ambulance.  Two hours later, we learned that he had a brain tumor the size of a grapefruit,  that was pushing the left side of his brain over the midline of his skull, into the right side.  The doctors didn't know how he could have even stood up or walked or talked over the last month or so.   When the old MRI's were reviewed from 1999 and 2000, it was discovered that those MRI pictures and the written report showed a "possible neoplasm" (tumor) that "should be watched and monitored."   We never were told of that report.  We never saw the MRI.  We believed what the doctor told us.  We didn't have the internet then to look things up...we took the doctor's evaluation for gospel.   No one at the time told us that seizures can be a sign of a tumor. Not the neurologist.  Not the primary care physician---who also is an oncologist.  No one.  No doctor.  No one.  Even when Mike changed neurologists in 2003, it was never mentioned, and the new doctor did not think it necessary to do a follow-up MRI at the time.  In the beginning, in 1999, in the first pictures, the tumor shows to be about the size of a quarter.  In 2000, it is a little larger, between a quarter and a half dollar...you can't notice it right away...you have to look at both and compare.   Evidently this was never done.  Five years later, it was too late.  17 months from then, Mike was dead.  The surgeon who performed Mike's second brain surgery, when questioned about the appropriateness of the prior treatment, did "off the record" say "At the very least, I would have called for an MRI each year."  That was all he would commit to.   

So, sometimes it doesn't even do any good for them to know...they may not "see it" as important...they may just chalk it up to "it might be____________(fill in the blank, it doesn't matter)."   Or nothing may turn up, even when it is right there in front of them.   Mike is dead.  Mike had a brain tumor that was growing in his head for who knows how long, that killed him.  This tumor was seen on an MRI seven years prior to its killing him---but no one thought it important enough to tell him or his family, or to follow up on.    I don't mean to sound bitter.  The bitterness is actually over.  The resentment has died down over time.    But the regret is always there...why didn't we ask more questions?  Why didn't we ask to see the films?  Would we, as lay people, even have noticed it then?  Why didn't someone say that seizures can sometimes be a symptom of a brain tumor?  Why?  Why?  Why?

The answers to those questions won't bring Mike back.  The answers won't close up the huge, bottomless, irreparable hole in my heart. 

Bonnie, Kathy, Trudi...and all those who have dealt with a physical illness ending in the death of their child…(as well as those who “got the dreaded call”) I know what you feel, I know what you carry...I ask "why?" also.  But I hear no answers….  The only thing I hear is the crying coming from my heart….always. 

love and peace to each of you,

carol   mikesmomrs 

 

[mikesmum]

Carol - Back in 2002 (roundabout) Mike collapsed in Blockbuster.  Just as you described, face first, no crumpling.  He collected a metal display which embedded into the side of his face.  He broke his two front teeth, split his head open and remained unconscious for some time.   The young guy at Blockbuster called 000 (911) and when asked what had happened he said 'I think its junkie, he has dropped". 

Mike had been to the doctors for months after a bout of glandular fever.  With each visit he complained of  being light head, dizzy, faints and overall  being tired all the time.  Luckily, when the ambulance arrived, Mikes partner told them I was an EMD and they  looked at Mike in an entirely different way.  Luckily he was on a heart monitor in Emergency and it showed some irregularity. Initially it was thought it was due to the shock of collapsing.  But I wasn't going anywhere.  He was referred to a cardiologist who in turn put a halter monitor on him.  With one day of completing his week he was scheduled for a pacemaker.  The otherside was that the glandular fever did impact on his cardiac muscle!

I know it doesn't alter the fact that Mike has died.  It doesn't give me any 'satisfaction' to have found out why he collapsed.  But what I truly want to continue to do is raise awareness.

One thing in the area of Emergency Medical Dispatch is the potential for opinion and complacency to get in the way of the true story.  The same can be said for the medical fraternity.  To thing outside the square, to query the possibilities and to ensure nothing is left to ponder.....maybe something I can channel my energy into.....

Carol - Your Mike is 'fit free' now........nothing will change his outcome....but think how his life has changed so many, just by him being there.....Take Care...Trudi

[mikesmomrs]

Trudi...yes, the guy attending the cash register at the gas station did not come out when he saw Mike...he called the police and also said "someone's od'ing in the driveway."  THankfully, we live in a small town and when the police came, they recognized it as a seizure, and brought Mike home, bleeding and all, rather than to a drunk tank or somewhere equally as inappropriate.  Yes, I am comforted by the fact that Mike is now "flying free and happy" in that he no longer suffers any illness. 

We do have the added privilege of seeing his boys often....and I am so sorry that the path to your sweet granddaughter is currently not open to you.  I do pray that changes soon and you are allowed your rights to be with her. 

Mike's littlest one, Damon, who is just three, is just such a sweetheart and I don't know what I would do if we didn't have open access to his boys  Damon's hugs are precious and his smiles are so bittersweet sometimes.  We even get to have him overnight some times.  It is such a heart tugging thought to know that he will never truly "know" his daddy, other than the stories he hears, etc., as Damon was less than 2 when Mike died.   I do think though that the older boys will remember their dad, as they did have a very close relationship with him, and perhaps they will share their stories/memories of their dad with him.. 

I hope you have a nice day today.  I am going to the opening day ceremonies of the Red Sox ball team today, with my younger daughter, Cathi.  We know that Mike will be there with us, in all the excitement, and the tears will fall, but so will the smiles be there as well---this was one of Mike's favorite places to be.

love and peace,

carol  mikesmomrs

[mikesmomrs]

Just wanted to share this pic of Damon...Mike's youngest.  this was taken early last fall...time for some updated ones...

[mikesmum]

Carol - He is just gorgeous!  The cheeky grin and that hat!  Have had an okay day.....updated Mikes site.  It was mentioned that I omitted any mention of Amanda, Harmony's mum and Mikes partner at the time he died.  It is hard, given everything that has happened, but because I know in my heart Mike loved her I have included some pictures of Amanda, Mike and Harmony.......

Hope the Red Sox day went well......another sport, another world....but I am learning all the time.....Trudi

[johnnysmama]

Trudi and Carol

I cannot begin to understand the pain you had everyday your beautiful boys were sick. Parents have such a strong protect and keep safe pull with our kids and you had so much time to worry-it had to be hard wondering if they would get better or what was wrong. the frustration now with the doctors! All i can say is hindsight...it is easy now to second guess yourself but you KNOW you did all you could with what you knew.

Your stories are so heartwrenching to hear I can't begin to imagine your pain. Thank you for sharing and know everyone hear is listening and cares.

What beautiful children they left-what legacys.

Take care,

Kay

[wyomingsal]

Damon is so cute.  I have 3 red heads so maybe I'm biased but he is really one cute kid.   

Sal

[ericasmom]

Hi All,

Boy, the stories read here today make a heart strain to beat. I know that more knowledge may not in the end, been able to save your children Trudi and Carol, but it sure would be great if we could really depend on the belief that our hospitals and doctors are thourough and communicating well.

I just read an article yesterday that spoke about a boy who died from what the docs thought was menegitis, and he became a donor. I thought it odd to donate organs with bacterial menegintis, but what do I know? Anyhow, as it turned out, he had a rare form of lymphoma and now all four of the recipients do too. Two of them have since died with the same cancer. Yikes, who is doing the double checking on these things?

Eri was a donor but due to the removal of the life support, her vital organs were compromised from lack of oxygen. She did however donate corneas, heart valves, bones galore and has added to the lives of over 20 people.

May your hearts feel the love, as we have been through many battles and now we need to rest in a safe harbor.

[daveydow1]

Mikesmom, Carol,

   Damon is such a darling child! What a sweet picture. I'm glad you have

   access to the children. Makes it better to have them in your life. My son,

   Davey, didn't leave any children. I have wished, many times, that he had

   left a child, so that I could still have a part of him here on earth to love.......

   but it just wasn't meant to be. Peace and serenity to you.

                                                Daveysmom,  Sherry

[summergirl]

Carol - I totaly understand how you feel and althought I too have let go of the anger at the doctors I still have moments of WHY did they not do something more for my Jessica - how could they not see that an 18 year old girl doesn't end up in a heart hospital for no reason - why did not just one doctor take the time to LOOK harder at what was happening. Anyway - all of you are right, Jessica is gone and it does no good to question the how's, why's or if's but I will always have moments.

Damon is so beautiful - the eyes!!! Children are so precious and innocent it can some times break your heart. Tonight I read a book to Tavian called Snow Bear (his favorite) about a little bear who gets lost and has to find his way back to his mommy which he does of course in the end - afterwards as he was falling asleep he said "can I be your little snow bear mi-mi and you can be the mommy bear" and I said "of course" and then I said "good night my little snow bear" and he replied with "I love you mommy-mi-mi" !!!  My heart jumped but I held it together and then I heard myself say to Jessica "it's ok Jess - he just misses you so much and he needs to say the word mommy, you will always be his mommy".  One little innocent thing that he said tore my heart in two but I understand it is something he needs to do and tomorrow I will be just mi-mi again.

Bless all of you - very tired tonight so will once again try to get to sleep or at least rest my weary bones. Kathy

When you try to fix a life as shattered as mine, there are always a few pieces you can never find.   I love my daughter, my Jessica - Love mom.

 

[mikesmum]

Kathy - The pieces of our lives fly in a thousand directions with each and every tragic event.  Some stay put, some easily recovered but others will never be found.....Even at this age I find my innocence can in many ways be assaulted by what life sends me, and my never ending inablity to regain ground is forever present.

Jess - your baby needs to hear the word mummy in his life.  It truly means someone who loves and cares for him and makes him feel safe.  In his heart and his memory that will always be you, it is something he feels with his his mi-mi.   

Kathy - You know the early days of Jess and Tavian.  This part of his story is for you to keep and in someway pass on to him as he grows....Never going to be easy, the mother daughter connection features greatly in this story.   But my friend, with everything else that has been thrown at you....this is a task I know you can handle...speaking of your beautiful daughter and her journey to being Tavians mum.

As always Take Care.................Trudi 

 

[loveyoujustin]

Hi everyone.  I haven't been on BI since very early Sunday morning and all I can say is WOW.  My heart skips a beat reading all of the heartbreaking posts, but it also skips a beat looking at the pictures of the beautiful, precious children that are certainly a gift from the powers that be, but also a gift from your precious children to you all that are so blessed to have them.  My husband went through a period where he kept wondering why nobody asked us about Justin being a donor, or trying to obtain/freeze sperm.  I completely understood why his mind was racing with such thoughts, but I tried to explain to him that it is not possible, once you're body has stopped functioning completely.  I know several of you are health professionals, is this right?  Justin was very popular and well liked, and I just kept hoping that sooner or later, somebody would knock on my door and say "I'm having Justin's baby."  How joyous those words would be to my heart! 

Bless all of you.  I truly love, not to mention, really need, all of you.  You are my pillars of strength right now.  I only hope one day I can be the same to someone who needs me.  My wishes are for peaceful days and sleepfilled nights for  all.

Lots of Love,  Trish

PS  Thanks so much for watching the "mini-video" I made, and all of your kind words.  It means so much to me!

 

[loveyoujustin]

It's me again.  I really am getting to know how to do things on this computer!  I didn't know how you guys all posted those "extra" pictures on the bottom of the posts.  I guess I figured it out.  That is my great nephew, Cadan.  He is the youngest of my neices children, but so very special to me.  He is truly like my "medicine." I know you all know what I mean.  Those are sweatshirts that were made as a fundraiser for Justin's memorial fund.  Cadan remembers Justin very clearly, even though he only just turned two his week!  He talks often of how Justin talks to him, and what Justin is doing, and how Justin comes to play ball with him.  Oh well, sorry for going on and on.  I'm going to try one more picture of Justin and Cadan.  Hope it works.  Good night all.

[wyomingsal]

Trish,

I so understand about wishing a girl would come up and say she was pregnant with Justin's child.  I work at a crisis pregancy center and would day dream that a girl would come in and say my son was the dad. I would adopt in a heartbeat if the girl perchance didn't want to keep the baby.    To let you know how unrealistic this was...my son was only 11 (but he did look like a teen and was already 5 ft when he passed).  It was not very likely (more like impossible)...but sometimes when we lose a child we want so very much for their line to be passed down.  We want to still have a little piece of them in a grandchild.  We really want them back but we can't have them so we want the next closest thing. 

Peace and blessings apon you,

Sal

 

[mikesmum]

Trish - What a beautiful picture......what beautiful big expressive eyes.......

Yes these young ones are truly medicine for the soul.  I love the print on the windbreaker......can you tell us more about it??

Don't ever apologise for posting more than once....especially if its to share you family, your memories or photos.  Downloading pictures is a feat and a half...congrats.

Trudi

[summergirl]

Trish - what a beautiful boy Caden is - so cute you want to cuddle him. I love the shirt and as Trudi said can you tell us more about it.

Trudi - my dear friend - your words as usual lift my spirit high - you have a gift of words and I wonder when you will write a book - I would buy it!!

To all of you who so wish for a grandchild of a lost loved one all I can say is I hear your pain and I hope I don't upset anyone with my tales of Tavian. I need to share him with my extended family so I know you understand and accept. I finally got some pictures and will post tomorrow nite.

Peace be with all of you my friends - talk later. Kathy

 

[alwaysmyjennifer]

Mamabets, I got preoccupied with recording the new cd, and somehow it slipped my head to email you - please slap me silly for this. I don't have your email on this puter, so if' you can email me, I'll get those tunes to you. I'm working out of town ... again. At least I'm not on the bus this time. Jenni's angel day is approaching in six weeks, and I'm already feeling the blues coming on. I think it's been worse since my wife was told she only has two years. In a way, I'd rather it wer Jenni's killer, but then... you know my big forgiving heart. Francesca is due about the same time as Jenni's angel date. The doctor said if she isn't born by the 16th, then mommy gets a C-section. Grandpa's already scheduled time off and I have my travel plans. I'm gonna see my granddaughter! I can't wait, kiddo. Take care of your precious self, my dear friend. If you haven't my number, I'll give it in my email. Til then, luv you, hugs, Me

[briansdad]

Here is some pics of brian's girl at our first car show

[briansdad]

here is the other side

[alwaysmyjennifer]

briansdad, Greg, your little granddaughter is so beautiful! While I'm sorry for what is, I'm glad you are so very blessed you have her. Those photos are adorable. My third daughter is pregnant, due next month, so I'm planning to see my grandson in St Louis first, then go to MD for my granddaughter's birth. Keepin' ya in my prayers, Mark

[ericasmom]

Thanks to all for the great photos of grandkids and greatnieces and nephews. I have 8 great ones (nieces and nephews), and they are a delight. Please never worry about the photos adn stories making me sad or envious. I just like knowing all the ways that life carries on for each of us here. Reaffirmation is a good thing for us all and how better than through the lives that bless your lives?

Peaceful sleep,

dee

[briansdad]

Good for you Mark. New life makes sticking around here worth while doesn't it.

[alwaysmyjennifer]

you have that right. it seems to get pretty tedious after a while, especially after such losses. Can't wait to get back home and share a few photos with my friends here. I'm always praying for you all, Mark

[heartbeataway]

Carol, Damon is precious!  You have such a way with words and seem to write just the right ones at the right time ......... thanks.

Kathy, package is on the way. ARVD is relatively new ....... at least as far as diagnosis.  The impact is on the electrical activity of the heart which causes other problems. Perhaps it's not that the doctors were negligent they didn't know and therefore didn't know how to find the problem.  Jason had a physical just five months before he died .......... he was in congestive heart failure then and they just gave him a diet for his slightly elevated blood pressure. We will never know ..........

Briansdad - she's precious!  And she's the spitting image of your son!  Great pictures!

All the babies and even pets are so cute! 

JasonH'sMom, Bonnie

[mikesmum]

Greg - She is beautiful......Who's her daddy??....just look at her smile and her eyes, can't mistake her for anyone but Brians..........

Precious babies that in essence save us from so much and give us that reason we were looking for..........Thanks for sharing...Trudi

[johnnysmama]

Kathy and all-Please do not stop the pictures-they give me hope with their beauty and innocence.  I too wish my son had left a legacy as he was engaged and due to be married 2 months after his death but that does not make me any less happy to hear and see your grandchildren or nephews,etc. Tavian stories are so sweet. We are all in such pain over our children how could these sweet faces make it worse? Actually they give me hope and understanding of why we need to be here for them-all the children in the world.

 

Greg-My heart about burst when I saw how much your grandaughter looked like Brian.  The shirt idea was very cool. It must  bring some comfort to be with her and at the car shows with all the people that loved your son. He is smiling at you for that.

[4everjoeysmom]

The photos are wonderful...

Summergirl Kathy, I was especially touched by your recount of Tavian's bedtime story and what he said to you.  I think sometimes it's easy to forget (or at least not consider, for those of us who have no grandchildren, neices or nephews, etc) that as innocent as little ones are, they have many of the same needs as we in their grieving and healing process.  Just as I need to hear and say Joey's name often, and you your Jessica's, dear little Tavian also needs to hear and say mommy.  Thanks for sharing such an intimate moment, and for the enlightenment into the heart and world of a child's journey---painful yet precious...  Hugs, Claudia

[wyomingsal]

I love all the pictures of the beautiful grandchildren...neices....nephews. 

Wonderful precious children.  Each life is such a gift.  Brian's daughter is adorable. 

Sal

[mommabert]

can someone help me !!! i fill like i have lost my mind. for starters i forgot my grandsons birthday it was yesterday. he turned a year old . he is the one named after my son josh ( josh is why i am here) he will be gone 2 years next month on the 8th. than i keep making stupid mistakes at work. i am afraid it will cost me my job if this keeps going on . their are alot of changes going on at work. i fill like i can not keep up. is this normal. i cant keep going like this. how can i help my self to do a better job at getting beter?mommabert

[daniellemom]

To everyone,

The pictures are great, and so very cute.

Greg, Your granddaughter looks just like your son.

Danielle was 21 when she passed away which will be 6 months ago this Friday, I also have a little version of Danielle my youngest daughter Mattie who is 5 and they look just alike and act just a like. It's not a part of Danielle but Danielle really loved and took care of Mattie. Just the other night I corrected Mattie for something (which is hard to do now but trying to do better.) She was sitting in the timeout chair crying and saying if sissy was here you would not do this to me! It broke my heart, and she was right, Danielle would tell me I was being too hard on Mattie and she was just a baby. I miss Danielle so very much.

Thanks, for listening

Sonya (Danielle's Mom)