Sunday, January 27, 2013

My Friend Jen.....

We all have special friends in our lives. Each one of those friendships is unique in it's own way. Unique in the way it started and the way it grew or didn't and to the meaningfullness of that relationship. When we are little kids friends are just that..friends. When we are young children are friendships are pretty much all about the fun. What a great time. In our teen and high school years friendships are formed but with more expectations. As we grow into adulthood we form many friendships through work and college for some. Speaking for myself I made some valuable friendships through my work experiences. Much better than when I was younger and in school. As a matter of fact the best friends I had in school I have'nt talked to since I have been out of school and I won't even mention how long that has been...Let's just say it's been awhile. And then there will be people you meet through a series of unfortunate events or tragedies. When worlds collide. Those people will become dear friends and very special to you. They help you pick up the pieces. They understand you. I met one of those friends on June 28, 2010 at CHOA (Childrens Healthcare of Atlanta) at Egleston on the worst floor ever. The 3rd floor AKA The Cancer Floor. So let me tell you about Jen...... First of all and most importantly she IS Lily's Mommmy. She is one of very few people that I know that her soul just flows out of her. She has the Most beautiful blue eyes I have ever seen on any person. She has a big heart. She is strong. She is very funny. She is very real. And she has a broken heart. You see I met Jen and Lily and Lily's nana on June 28, 2010. Bud, myself and Jessi were in Room 3250 on the dreaded 3rd floor at CHOA waiting in our room for Jessi to be taken down to get her central line put in. It was a Monday. Lily was admitted that day for chemo. They were admitted to the room right across the hall from us. We just made eye contact that day and we both know what was going through each others minds. Me-"Oh Gosh...there are more kids going through this" Jen-"Not another family" Funny how certain things are etched in your brain but somedays you dont even know what day or month it is much less your name. When Jessi came back up after surgery she had to be put in another wing because of the compromised immune system from chemo treatment she had to be in a controlled air hall. Less chance for contracting anything to make her sicker. So here we r now in room 3238. Lily had been moved to the room across the hall. Room 3241. Its now been just a few days and Lily is going home. Jen came over to introduce herself and Lily and Nana...Lily was captivated by all the sticky notes that Jessi had plastered over every part of her bed and room. All prayers and scripture. Lily gave Jessi a bracelet. A true friendship was formed that very second between a 9 year old and 13 year old. That friendship continues today.....just not here on earth. Anytime Lily and Jessi's treatment would overlap we would always of course see each other. Sometimes for days or a few weeks. I remember one day Jen said let's go get some coffee and go for a walk. That we did. We went to I think Barnes and Noble at Emory it was just walking distance from the hospital. So here we are a few minutes out and we should have been at the magazine stand reading People and escaping from reality for just a little while. But no, we are in the health section trying to find cures for our kids. I wont' ever forget that time and how comforting it was to spend time with someone who really understood you. I have to add that I read in one cancer book that a certain type of Chinese tea could help cure Leukemia.....So of course I dumped that on Jessi when we got back and she did her famous eye roll and was like "Im not drinking any tea". It was such a funny had to be there! Another time when Lily and Jessi where in for treatment I walked down to Lily's room with Jessi and Jen came to the door and we just talked in the doorway. Kids are not allowed in other kids rooms while they are admitted. Whatever!!.......I remember part of this particular conversation cause Jessi was absolutely tickled over it. We were discussing just how much are life had changed and all and got on the topic of exercise. I remember Jen saying "I had ABS" I so remember that. What tickled Jessi so much is that her Dad always said "I got abs". It was just a funny moment. One I wont forget cause it made Jessi laugh and that was always so good to hear. (I miss that laugh too by the way) Because of Lily's big heart Jessi became a recipient of a wish from Kingdom Kids via Lily's Run. Jessi was able to make it the run that October in 2010 but we werent able to stay long and wound up at the hospital because she was sick. Because of Lily so many children stricken with this awful disease have been able to have a wish granted and she has helped children have a "Happily Better After" Jen told me one time that "we were members of the worst club ever" she was right. I didnt want to believe it. But, she was right. After Jessi's service and all Jen would randomly text me to see how I was. I so appreciated it but at the same time was torn because I was her nightmare. I didnt want to be a hindrance in her hope for Lily's recovery. It's just an unspoken thing really when your in this club that if you still have your child you don't want any reminders of examples of how it could be. You only want to hear the good. Jen's big kind heart invited us to stay the night with them around my birthday. She even went through the trouble of finding my favorite food (italian) and making me lasagne and having a cake. Sweet Lily had a necklace she showed me and had put a picture of Jessi and Ava in the locket. Lily also made us a welcome sign at the door and a happy birthday sign for our room. They just opened their home to us. So grateful for that. Especially at such a difficult time. Lily had fought so hard against this beast. Jen would always post updates on Lily's Caring Bridge. Whenever I would read Jens posts I would feel like I was talking right to her. She was always positive and had such a we can do this attitude. It was a sure thing, Lily was going to beat this. Period. I believed that. Then along comes December 15 2012......... And now my friend Jen is having to learn to live like me without her child.... You would think that I would have the right words and great advice for her since I have experienced this. But the truth is I don't. I feel powerless. I felt powerless when I first heard the news. I feel powerless today. Some will understand this and some won't. In the grand scheme of things that really doesn't matter. This is "The Worst Club Ever". I'm so thankful to have met Jen, Joey, Lily and Audrey. I have often said that It would be OK if I had not ever met any of the people I have met through my horrible journey. It is really hard to say that about Jen. I know if given the choice I would do it of course to have my kid back and be living a relatively normal life again. I just wish that I would have met her under different circustances. Our connection is through our children and through cancer. That is the foundation and how our friendship was put into play. We both wish it wasn't so. If you asked me to describe Jen in only one word that word would be......Love. When I think of Jen I think of 1 Corinthians 13:1-13. This chapter ends with the word charity which is Love. Here it is: 1 THough I speak with the toungues of men and of angels, and have not CHARITY, I am become as sounding brass, or a tinkling cymbal. 2 And though I have the gift of prophecy and understand all mysteries and all knowledge and though I have all faith so that I could remove mountains and have not CHARITY I am nothing 3 And though I besotw all my goods to feed the poor and though I give my body to be burned and have not CHARITY it profiteth me nothing. 4 CHARITY suffereth long and is kind,CHARITY envieth not, CHARITY vaunteth not itself, is not puffed up. 5 Doth not behave itself unseemly, seeketh not her own, is not easily provoked, thinketh no evil; 6 Rejoiceth not in iniquity, but rejoiceth in the truth. 7 Beareth all things, believeth all things, endureth all things. 8 CHARITY never faileth: but whether there be prophecies, they shall fail; whether there be toungues, they shall cease; whether there be knowledge, it shall vanish away. 9 For we know in part, and we prophesy in part. 10 But when that which is perfect is come, then that which is part shall be done away. 11 When I was a child, I spake as a child, I understood as a child, I thought as a child: but when I became a man, I put away childish things. 12 BUT NOW WE SEE THROUGH A GLASS, DARKLY; BUT THEN FACE TO FACE: NOW I KNOW IN PART; BUT THEN SHALL I KNOW EVEN AS I AM KNOWN. 13 And now abideth faith, hope, CHARITY, these three; but the greatest of these is CHARITY. Much thanks to the Anderson family and My Friend Jen for sharing the Love Of Lily with the world. Until then.............

Saturday, February 4, 2012

I know this much is true.............

Life is hard. At times it seems to get harder.

We really have no control of our lives. We think we do. I thought I did. We never really believe that anything bad will happen to us. We have the world in our hands and we are invincible. Bad things do happen, to good and bad people.

I beat the odds so far......If I had fallen into mans world of statistics and listened to well meaning advice from everyone I would not be writing this entry today. Had I followed what was suggested to me numerous times by numerous people my life would probly be as follows.....

I would be seeing a shrink, taking meds to band-aid my grief and Bud and I would be divorced. Or......Bud and I would maybe still be married and living in Florida because we adopted a little boy from Russia!
Really......Thats how ridiculous gossip can be at times.


I have learned alot about people through this whole awful experience of having lost Jessi because of cancer. My life stopped on June 26, 2010. The perfect life we thought we had control of stopped. I try so hard to explain to people what this grief feels like. It's really hard to explain the unexplainable. It has been just over 1 year but yet if feels like I just held Jessi yesterday. I miss her terribly. I can't even put that into words properly.

I am so not the person I used to be.......I was strong, confident, caring, considerate of others and so sure of myself. I was still that person during her treatment but after November 25th I lost the old me too.
I will be the first to admit that at times I have not been a very nice person. Many times. And still am at times. I guess if you are one of the people I havent been nice to and your reading this I'm sorry. I basically just shut down and shut everyone out. Your brain goes into self preservation mode. The mixture of feelings becomes overwhelming. Its even overwhelming for me at this moment to try and express my feelings. Regardless of what anyone says suffering the loss of a child is the worst. I'm not asking for special treatment either. I guess I just got to the point that it was just too exhausting to listen to all the advice. So along came Anger and Bitterness. Those are the hardest feelings to avoid. They still linger today. I try everyday to work through so many thoughts in my mind. I have given up trying to explain myself to everyone. There are people that have been in my life since I was born that have chosen not to be there for me. Some just can't deal with it because it's just too much for them to handle. This really is the Big One. No body really wants to confront a Mom that lost a child. No one knows what to say. Gee not like I have a choice in the matter. I HAVE to deal with this.

I just want to say that my friend Christina recently said something to me that totally enlightened things for me. Christina is Ava's mom and Ava had cancer too. She was only 4...just a few days prior to her 5th birthday her body just couldnt do it anymore.....Ava loved purple and Jessi would save her purple ice pops for her.....we have some good memories of the girls hanging out at each others hospital room doors.

In a recent convo with Christina she said "I wish people would realize that Grief is not a Mental Illness"
WOW!!!!!!!! A simple but true statement.

So to sum it up.......Im not Mentally Ill......I miss my girl Jessi....I will till the day I die...I wont ever be the person I was.....I am making it through each day.....It is very hard....I hurt for all the kids still fighting.....I hurt for my (Jessi) missing link......I hurt for all the things we wont be doing together......How do you just move on from that......I know the anwser to that! You don't....You take it with you everyday everywhere you go......FOREVER!


Tuesday, November 1, 2011

Lessons Learned in Hebrews

Tonite was another one of those nites that sleep seems to not be my friend. As I laid in bed staring at the ceiling thoughts of unforeseen events that transpired today just flooded my brain. I quit fighting and decided to just journal it.

Hebrews Chapter 13

2. Be not forgetful to entertain strangers: for thereby some have entertained angels unawares.

3 Remember them that are in bonds, as bound with them; and them which suffer adversity, as being yourselves also in the body.

I have arrived safely at today. I don't know where tomorrow will take me. My old life was pretty simple and for the most part planned on a daily basis. A pretty, well....normal life. Normal is not part of my vocabulary anymore. Change is inevitable but my particular change is not the kind you just adapt to very easily. If ever. It is a strange feeling to not have a purpose and to lack any motivation to do anything. This day was no different. I got up and my big task for the day was to clean and wipe down all the ceilings in our house. Just trying to keep busy and figured that it was ok to do spring cleaning in the late fall. I know my life probly sounds relatively boring. It is..........

The unexpected part of my day happened around 5 pm. Another sharp turn off the roadway of life. I didn't recognize the number immediately as I answered my cell....The call was from a case manager needing an emergency placement of 2 siblings for the night. About 30 minutes later they arrived at our house. I will just say when I first saw them my heart broke, as if its not broken already. I knew they where scared. Imagine for just one second being a child and having to go and stay at a strangers house with not one thing you own except the clothes on your back and shoes on your feet. I know that I am always anxious when a child comes to our house for the first time so I know its magnifide tremendously through a childs eyes.

They warmed up to us relatively quick. We ventured out and got pizza and rented a movie from Redbox.....After eating and movie they where pretty tired and ready for bed. They are good kids, just victims of circumstance.

As I laid in my own bed I just thought and imagined their life and what little I know about them. My thoughts are as follows........

How unlucky they are to be in their situation. To have a life of such uncertainy. No home. No family. Living with strangers. Nothing but the clothes they are wearing. But also, how Lucky they are to be alive, relatively healthy, to have each other.

I thought how Lucky Jessi was....she lived a good life....a too short one...however she did more than I did at 14. I never went on vacation. If I had lost my life at 14 I surely would have not done 1/4 of the things Jessi got to experience. She was born in Southermost city in the U.S., Lived on an island, lived on a farm, drove a car @ 11, snorkeled, tubed, skied, flew on a plane, amusement parks, cruises, hiking, mountain biking, camping, canoing, horseback riding and the list goes on. She was so lucky to have been blessed to enjoy these things. But so unlucky to get cancer.

I thought also how I have been dreading October, November and December for obvious reasons.....Thanksgiving is fast approaching and this year it will be a double blow....The date of Thanksgiving is different this year but it will still always be remembered as the worst day of my life. Black Friday has a whole new meaning this year as it falls on the 25th. I laid in bed thinking these kids probably dont even really get the whole Thanksgiving thing based on their past. I worry about being the House without a Christmas Tree and they don't even have a house to put up a Christmas Tree.

Maybe the whole purpose for them winding up at our house was to show that alot of people have it really bad. Even kids. I don't believe their is anything worse than losing a child. But if your a child and you lose your family I can definetly agree that this can be the worse thing ever for a child. I guess I am just trying to make sense out of life. And I am not sure that is ultimately possible. One thing for sure at least while these kids are with us they provide a diversion and sense of feeling needed. It doesnt take the pain away but they do make the time go faster and keep you busy.

I will close with something I have to say. My grief at times is unbearable. People say I'm strong. I'm really not. I just try and get through a day. Some days are much harder than others. I have cried everyday for over a year. Sometimes I cry so hard I almost cant breathe. That uncontrollable crying that takes your breath away. I miss the hugs and the "mom...luv u" I miss alot of stuff.

It sucks to have to hug a picture of your child when you long for the real thing.

Saturday, October 8, 2011

Beads Of Courage.......A Dream Bead......The Butterfly Bead that took the Dream away.

It has taken me very long to confront this blog. I have alot to say and share but just lack the motivation to do so. I just keep storing my thoughts in my brain and surprisingly they are still intact just waiting to be released one day.

Im writing today because I plan on staying far away from the computer tomorrow. It will be the big day for me to stay busy ALL day. Tomorrow morning at 8:10 am 15 years ago I gave birth to my first and only child Jessi. I knew the years would fly but never imagined the course I was on or what awaited us just 13 and a half years later.

So here I am. I have arrived at today. Pressing on till tomorrow, and the next day and the next day so on and so forth.

Beads of Courage...........a wonderful program for children with cancer....Jessi treasured her beads....she has hundreds....each bead represents a procedure, blood given, blood taken, chemo, wheelchair rides,infections, hair loss, the list goes on. Interesting thing about Jessi and her beads. She was probably the only kid on the floor that didnt make necklaces with them and hang them on her IV pole or wear them. She kept them in a large ziploc bag. All separted by color and what each one stood for. She was very protective of her beads. I had thought about putting them on some nice leather strands and hanging them on my rearview mirror. That thought quickly faded for me cause most of the beads represent hard times in the hospital. If I had to pick one I liked or made me laugh it would be the wheelchair one. Jessi loved it cause she thought riding in the wheelchair was too cool. She had even tried to talk us into buying one for her for at home......
We have all her beads put away and I had thought about putting them in a shadow box but havent got there yet....not ready to look at them really yet
cause when I do I see cancer and I just hate it and what she had to go through to try and beat it.

The Dream Bead......Last year around September there was a big Beads Of Courage event at CHOA and Jess wanted to go to pick up her Dream Bead. Kids where able to request a bead that they wanted made for just them that no one else would ever have. Jessi's Dream Bead was a 2010 Maroone Chevy Camaro. Her bead wasn't ready at the event but she received it a few weeks later while in the hospital for treatment. We still have that bead. And it's still a Dream.

The Butterfly Bead.....I never knew of such a Bead. It's certainly not on the list of beads when a child is collecting them. It's the bead no one wants that's why no one knows about it. I was handed the butterfly bead by a nurse shortly after Jessi's passing. I read about the butterfly bead then. You only get the butterfly bead and learn about it when your child doesn't make it. It's the bead that takes your Dream away.

I feel so ripped off many times. We were suppose to be shopping for that Dream Car today. We told Jessi when she was in the hospital that next year when she turned 15 we would get her this car. Some will agree with that and some wont. However I've learned to not care what other people think or say at this point. But, when your child is faced with a terminal illness you do what you can to instill hope and give them something to fight for and look forward to.

As of today, I don't do birthdays or holidays....that may change one day but for right now that is how it is.

So my whole goal tomorrow is to keep busy.....I will be driving to do Lily's Run. Last year we attended it but Jessi was sick and I pushed her all over in a wheelchair and then she wound up at the hospital because of a fever. So no matter what October 9th will be a hard day. Always. And unfortunately it will keep coming just like the holidays. Nothing stops.

There will be no celebration, blowing of candles or unwrapping of gifts. It will just be another long day to endure.

A bead of courage.

A dream bead.

A butterfly bead that became a nightmare........

Saturday, July 30, 2011

Seeing Past the Cover

I have learned to do this very well. The old saying to "Never Judge a Book By It's Cover" is so very true.

Last week a friend invited us to go school shopping with her and her girls. They are friends of Jessi's and we all went school shopping the summer of 2009. Of course we had all intentions of going again in 2010 but everyone knows that that was not possible. Initially when I was asked I thought about it and was considering it. Well, the more I thought about it the more I talked myself right out of it. Somethings are very painful. It is just hard to do things that Jessi should be doing with us and I know how much she loved to shop for clothes. I however was in a rational state (which by the way does not happen very often) and re-thought the whole shopping thing. Another friend of ours has a 11 y.o. girl and I just felt that I would love to take her to do some school shopping. She comes from a very large family and times are tuff these days and I just felt led to give her some shopping time.

We all met up Tuesday and did the usual mall and also some other stores. It turned out to be a fairly decent day. I won't say that I did not think of Jessi because I did. The entire day. It's kinda hard not to. But I am proud of myself for doing something that is very hard to do. It was a major step for me.

During our time at the mall and a few other stores around the mall a few random people caught my attention.

There was the young woman in a wheel chair with what I assume was her son....The woman pushing a stroller with 2 chinese babies and another toddler chinese little girl walking with her (Mom was not chinese)......Another woman in a wheel chair at Target watching her son play video games.....

I wondered what was their story and how they got to the place they where at?

Then I looked at myself......It was me, Bud, Steven and Sandra......I wondered how many people saw us and thought wow look at that lucky family...they got one of each, a boy and a girl....Maybe know one thought that but I know I have thought those things way before our life made a drastic change over a year ago. The funny thing is, of all the people we came into contact with or passed by that day know one knew that someone was missing from the picture or what we have been through over the last one knew that Sandra isn't mine she was just with us for the day to go shopping.....That Steven is not mine yet, he is living with us during this trial period to see if we can adopt him...

To the world we look like the perfect family......I just wonder how many people I pass daily that appear to have it all but it not to be so.

I look at people and the world differently than I ever imagined I would.

I joined a group on Facebook for Moms like me....I was saddened to see that there are alot of "Me's" out there.....I don't know alot of people that have been through this AWFUL process so finding these Moms has been good. But however many times it's too depressing to learn so many parents suffer the unthinkable.

Long and short of it all.......Don't be so quick to think negatively or look down on someone cause they many not fit how you think people shuld look or because they seem mad, sad or just plain miserable looking....There is usually alot past the cover of what you physically see..

And about Steven......2 years ago this August we were going thru the process of being approved for adoption....Just shortly before Jessi was diagnosed we where aproved and licensed to adopt....she so much wanted a brother or sister...of course it was out of the question for quite sometime...but Bud and I had the choice to move to Florida and live in the Villages with a bunch of retired people....or to add a little purpose to our be needed....Steven will never replace Jessi...He gives us a reason to get up help us get thru life.

So Next time your out......please look past the cover.......

Saturday, June 25, 2011

A Perfect Life.......Until.......

One year ago today my life was just about perfect. Now, that's not to say there where days of difficulty. Everyone experiences them. But over all my life was pretty much perfect. I remember when we still lived in the keys and would travel to Georgia as much as we could I would always sing the Green Acres song. You know, the one that goes "Green acres is the place for me, Farm living is the life for me, land spreading so far and wide, keep Manhattan and give me that countryside".

Our family was so excited to make a move and try something new. Up until this day last year "Life Was Good". Tomorrow will be June 26. The day Jessi was diagnosed with this crappy disease called cancer. The same disease that would destroy my beautiful child. I sit here and cannot believe a year has gone by. I never thought that I would be without her. NOT FOR A MINUTE!

I'm here to tell you your life really can change in a moment. Mine did. No one ever thinks its gonna happen to them.

So.....if your reading this and you have kids.....spend time with them. And I mean really spend time with them. Because to kids its not what they are doing but who they are doing it their Mom and Dad.

I learned that from and 8 year old this week......he talked about what love was to him. And it was simply having parents to spend time with.

Thankfully I was able to spend alot of time with Jessi. And I mean ALOT.
That's another reason this is so hard. Jessi was the whole package for me.

Simply put.........I MISS HER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And our "almost perfect life"

Saturday, June 11, 2011

Mom...........Jesus is Great.

I feel like I have been away from this blog in like forever. I find myself wanting to journal but as quick as that thought comes to me it leaves just as fast. A great memory will come to mind or a precious thought about Jessi but it just never becomes written. Somethings at times are just very painful no matter how good the memories are. I have found that to look at and remember all the the good times ( which are many) at times are just as painful or more so than the very few bad times. I think about the things Jessi will miss or the things Bud and I have tried to go and do only to think that "if Jessi was here she would love this or say that". Grief from losing a child is like no other. I have had people say how they have lost a parent and they know how hard it is or it's the same kind of grief. Guess's not. I'm speaking from experience.

Since Jessi has been gone I have had many mixed feelings on alot of things. So many that I could probably write forever. I look at life through a different eye now. Somedays I'm mad. Other days I'm sad. I admit that I have been mad at God. You see, there are people that I have met that have lost a child because of some type of accident. Many times in cases of car accidents a child has died that was riding with a friend. For those families that their child was a victim your flesh has "someone" to blame". That's just human nature and a fact as to how it works. With sickness or especially cancer there is no one to blame. The only one I have been able to look to an ask "why" has been God. Well, I haven't been the best Christian lately. I haven't really read my Bible. I have not been consistent in prayer. The only thing I have been able to talk to God about is why. My flesh expects Him to answer me. My time is not God's time.
On October 27th Jessi and I walked out of our front door together for the last time. I never thought she would not be coming back home. This was her very last chemo treatments then it would probly be on to Bone Marrow Transplant. I still remember that day at the front door. Hannah had spent the night and Bud was taking her to meet her mom for school. We all left the same time, Jess and I headed to Atlanta. Earlier in the wee hours of the morning I had a dream about another child that was very sick. In my dream she didnt make it. I saw things that I'm not gonna write about, nothing bad I just want to keep them private. After we got to the hospital Jess and I where in clinic waiting to be admitted, that child I had the dream about passed away while we were there. That nite after Jess was admitted I was awoke again at almost the same time and I saw that little girl and here is what happened....I asked her if she was ok and she said yes, I asked her if she hurt or was in pain and she said no I'm happy and she showed me that little grin and her special giggle and I sat straight up in bed. That little girl was Ava and I shared that dream with her mom. It seemed so real. I have always said I wish Jess would come to me in a dream, that I could see her and talk to her. It finally happened. And this is how it went..........I was standing in the doorway to Jessi's room that connects to her bathroom and Bud and her were jumping on the bed. It was Jessi at about 11. I yelled "Jessi"!!!! And Bud said " It's real its really her" about that time she came running over to me and we reached out to hug each other and she just dissappeared.....Then immediately Jessi was sitting on steps and it was the Jessi we all new just before she got diagnosed....I looked at her and asked "whats it like, what do you do" she new I was talking about Heaven without even saying the word. She said "Were in groups" I was so desperate in my dream to know everything.....Then Jessi looked right at me and said "Mom.......Jesus is Great" I woke up immediately after she said that crying. Those are the best words she ever said next to "Mom.....I love you" I cry everytime I try to share it with someone and even now while I'm trying to type this.

Everyday is still very painful but this dream has given me some peace. It was the exact words I needed to hear. Words to remind me that I need to keep my focus on God as hard as it is sometimes.

"Mom.......Jesus is Great"......She is right you know, He really is......