Evan Albert

•November 25, 2012 • 12 Comments

I have been writing a bit about each of my kids and as I walked into Evan’s room, saw him sitting at his desk praying I thought today was the day to write about him.

Some people may be fortunate enough to have seen the side of Evan that I am most proud of…the loving, caring & sensitive child who loves God and who is compassionate beyond his 11 years.  I have been blessed to be his Mom and watch him grow into this amazing young man.

Evan came into the world on June 25th 2001 at @7:30 in the evening. We did not know we were having another boy and we were all happy when he joined big brother Eric. As we were still grieving the loss of my father in law 2 months prior, Evan definitely lifted everyone’s spirits when he came into the world. I remember looking at him when they first handed him to me and he had this little birth mark right over his heart. It made me feel like my father in law knew him ( he died from heart disease) and so we named his middle name Albert after him. After a short stay at the hospital we were on our way to start our life with two little Vivian boys.

Life with Evan was pretty easy from the beginning. He sucked his thumb so he was always a good sleeper and that always makes life easier. I knew from early on that he was a pleaser…he always loved when he made me smile, or anyone else for that matter.

As Evan grew I started to realize who he was and what special gifts he came to this world with. He would want to pray a lot and ask me about God and why certain things had to happen. I told him (as I tell all my kids) that God has such a plan for him…but for Evan I knew it was going to be different. How many times in life does a kid come along that has such compassion for the world that he would do anything to change it? I know it happens but I don’t have the pleasure of seeing it too often. On the first night that American Idol ever had the Idol gives back show, we sat there and watched and cried about all the sadness all over the world. The children that they showed from Haiti to our own country who were without so many things that we all take for granted every single day…Evan was heartbroken. He went up and got whatever money he could and brought it down so we could pledge that and some.This was not a one time thing for Evan…he truly lives his life like this …thinking of others first.

When Evan goes anywhere from an amusement park to a store that has a crane game, his idea is always to win something for one of his siblings. Sometimes I have to admit I get frustrated because I want him to do something for himself but it never shocks me when Ella or Eli says that Evan won this and gave it to me. This world is typically not made for those with such a soft heart. I know this first hand and when you feel others pain it is not always a good thing…you need to learn to separate yourself from situations that you truly have no control over. Sadness is part of this world but when you let it in too often it can take over and no good will come from that. Balance is the key and that is what I try to teach Evan.

This past July Donna took us all ( 23 of us) to Barbados to sprinkle my Dad’s ashes in the ocean. It was a beautiful trip and we made some great memories. The day we went on the boat to say goodbye I am sure there were many mixed emotions all around but we were all together & that is what mattered. As we were saying our goodbyes I looked over and saw that Evan was comforting Donna. He sat down next to her and started hugging her and rubbing her back. It was so very comforting to me to watch him try & comfort her when she needed it most. I think he also came up to me every 15 minutes on that boat ride just to make sure I was o.k. Whenever he saw a tear in my eye he would wrap his arms around me just to say “It’s ok Mom, Fuzzy Poppop is with you & he always will be” Sometimes I was not even crying but he must have had an idea I was thinking of him and he was always there when I needed it. God Bless his little soul. What a gift!

As I said at the beginning I went upstairs today to find Evan praying so I asked him what he was praying for. He told me he was praying that we would find a cure for this horrible disease… he told me he does not want to picture a funeral for Eli or Ella so he will just believe that we will get them treatment and they will live a long healthy life. I had to walk out after a minute so he would not see me cry but when I went back he was up in Eli’s top bunk with him. Eli had gotten hurt down stairs with the big kids and ran up to his room crying… of course that is where Evan would be…consoling Eli and turning that cry into a laugh. Not surprising at all and never taken for granted…he is a gift and I am forever grateful!

Posted in Diagnosed

Life goes on

•November 23, 2012 • 1 Comment

No matter what is happening in anyones life, time does not stop and life goes on. I get this and I am totally on board. I would NEVER expect things to change just because I am at a standstill right now… that would not be fair. I know some friends or family are afraid to talk of other issues to me but I welcome them all. Lets talk about Brad and Angelina or Honey Boo Boo (whoever that is). That’s the amazing thing about life…through your fear or sorrow the laughter remains… and the smiles make you realize that you are just one little speck in this thing called life.

Today was a day of giving thanks… and as I woke up I was very grateful & thankful for so many different things. Unfortunately the day went on and unraveled as it so often does. We had such a nice time at my brother & sister in-laws with the family but as often happens the boys were fighting and tattleing on each other. I had enough..calling each other names then telling me just to get me upset. This is where I expect more of them and maybe that is wrong of me. Yet maybe I should welcome this as it is showing me how normal the boys lives are right now. Maybe that is just another thing I should be grateful for instead of looking at it negatively and wanting to kick their a*$$ ( which I did …to Eric anyway)

On to my Mom’s… Yeah, this was no better and actually ended much worse. I don’t expect anyone elses life to change through this but I would hope that the selfishness would be a bit less and maybe the filter could become a bit more filtering if you know what I mean. NOPE!! Some things never change and I am stupid for thinking they should. Why would I expect God to allow one thing to go good when so many other things literally stink right now? I guess I really have a lot of lessons to learn in this life…Lucky me!

When they say God only gives you what you can handle I think that is just a bunch of crap! Who truly knows what you can handle until it is right in front of you? I would have NEVER thought in a million years I could still be breathing after learning my kids were sick. There is no choice in the hand you are dealt…what would you do…crumble? run or hide? No…you would handle it just like I am. I don’t think God “gives” us things…things happen and it sucks but we have no choice so you just take one step at a time and press on.

I did not want to handle a messed up up-bringing or to go to 11 different schools. I did not want to try & handle meeting new friends ever year until high school and I sure as heck did not know how to fit in anywhere. I truly believed when Hut & I got married and when we had kids that this would be MY time…MY normalcy…nothing else major should happen as I had my fill long before getting married. “God only gives you what you can handle”? Well I had my fill and those days were over as far as I was concerned. It is time for good things to happen in this stage of my life. I would keep them in the same school district and they would know the same people growing up…that was probably the most important thing to me. I want them to grow up & know who they went to school with and have that sense of their community when they get older. Maybe that is another reason all the nice things that people are doing for me are hard to handle. I never really grew up in one spot…I “went” to Norristown but I am not “from” Norristown and to have these amazing and wonderful people be so caring and thoughtful it is a bit hard to handle. People who do not even know me or our family are doing amazing things and expect nothing in return. WOW!! So yes, I had a screwed up life for many years growing up and I really thought I had paid my dues but I was wrong…yet there is a happy ending. God has lifted me up & protected me, he has shown me the goodness that exists in the world and he has brought so many amazing people into my life! The most important think he has done is how he has allowed me to forgive when forgiving was not deserved. I remember the day I gave it all to him saying ‘I hate this person & I don’t want to ever forgive them! They don’t deserve it” Then I got on my knees and through the tears I said “take the hatred away and allow me to forgive if that is what you want” Guess what he did! It does not mean that it is easy or that they deserve it but I will leave that part up to God. I know he will guide me every step of the way even when I feel he is not here.

The Thanksgiving night ended perfect! We ended up at my friend Staci’s and her family welcomed us for dessert and some friendly games of LCR, which I highly recommend if you have never played before. Eli won the first game & it made my night. We played two more games and made some great memories that I will always remember.

So I learn to be thankful for everything because even in the bad there are great lessons to be learned…how would we know what the good is without the challenges. Yes life goes on and for the most part life is good.

Posted in Diagnosed

Eric Joseph

•November 22, 2012 • 6 Comments

My first born…the Golden child (the ongoing joke for a while due to the fact the he was the first boy to carry on the Vivian name)

Eric came into the world on Feb 7, 1999 at 11:42 a.m. After almost a full day in labor and a horrible epidural that slowed everything down he arrived and he was PERFECT!!! The joy I felt at providing the Vivian family a boy & providing my husband a son meant so much to me. All those years ago I seemed to care so much about making others happy so this put me on cloud 9. Eric was a great baby for a first child and set the standard high for our future kids.

Time went quick with him,as he made it pretty simple to be a mom. We truly enjoyed our moments with Eric. Being a Mom was great, scary, fun & trying all at the same time but it was so worth it. I knew some core values that were so important for me to teach him & thankfully Hut had the same values. To start, I made sure that prayers were said every night…bed time would be a definite time where we could spend some “quality” time together before nodding off. I still do this today even though some think it is unnecessary as they are getting older…(I disagree. Respect was another core value that I knew Eric needed to learn…look at people when they talk to you, shake hands, be able to hold a conversation with someone on the phone and most of all, respect ALL PEOPLE! Eric has proven to me time & time again that he is succeeding in the  respect area (besides respecting his siblings of course;)

Sometimes I feel bad… you know the first-born tends to get a bad wrap, always has more responsibility and is expected to be so much more mature than they really need to be. YUP! That is me and unfortunately I do expect all these things from Eric and more. Just Monday of this week I remember yelling at him about his grades. Although they were not terrible there was a bad grade or two for the moment and I was not happy. Normally I am on Skyward at least every other day to check grades and make sure they are not falling behind. Well right now that is not the case and I have chosen to try & not beat myself up over this. Monday night I had Eric’s conference and his teachers were so kind to meet me all at the same time. I have to say they were awesome. Every single one truly seemed to care about Eric the person and not just Eric the student. They cared about Eli, Ella, our family and wanted to help however they could. WOW! How blessed are we!! Another amazing school and awesome teachers supporting our family!

One of the saddest days in Eric’s short life that I can remember is when we sat him down to tell him how sick Eli was. As we were still at Dupont with Eli I had to call my friend Staci to pick Eric up after school. When we walked in the door he greeted us with smile as always and of course said “how was the MRI” ? Words could not be spoken at this point as I think Hut & I were both still numb. As we came around later on in the night we knew we had to tell Eric & Evan both. They saw the tears, heard the phone ringing & could feel the fear that we felt. As Eli went up to get a shower we just let it all out. “Your brother has a very rare disease” I remember the first words from Eric…”Is he going to die” We decided from the beginning to be honest with Eric & Evan about everything so we answered saying that they say it is fatal but we will fight and do everything we can to beat this. The tears flowed freely from them both and then from all of us. Our family of 6…how long will it remain? Our life as we know it is over…the “new normal” is just beginning. Poor Eric…just became a teenager and now is going to grow up quicker than I would ever want…now he will have to deal with questions of life & death that most don’t have to think about at this age. Please God protect them from this sorrow!!!!!

Yes we expected a lot from Eric from the beginning of this but it has always been that way… so when he is in therapy later in life he can’t blame their sickness he can just blame a Mom who always wanted him to be the best he could be from a very early age! Pheww… I mean come on…we all screw up somewhere right? They could all go to therapy for something, I just hope I make this time in our life as “normal ” as I can for as long as I can. As Eric’s Social Studies teacher said as I was walking out of his conference “Does Social Studies really matter Mrs. Vivian?” I could not agree more …what I think he meant is… does this matter right now? and the answer is not really…what matters is how he is doing, the support he has and that Hut & I are here for him when he needs us. Sometimes that is the best that we can give but as long as he knows we are always there then we have succeeded as parents. Love & Trust…that’s all we need.

I can only say that I am truly so proud of the young man who Eric is turning into and I know God has him covered with his Grace through all of this. Eric’s friends, teachers & family that have stepped up to help him get through this are truly a gift.  As they say “It takes a village to raise a child”  and we  are part of an amazing village!!

Posted in Diagnosed

Trust – a lifelong lesson

•November 14, 2012 • 10 Comments

Some people say we come into this world to work through things…maybe learn lessons. Some people may need to learn to have faith or learn to love or forgive… I am sure there are many reasons but for me my number one reason that I have figured out is to learn to trust. 

You get used to growing up in a divorced family and although it had its bad times it also came with two Christmases, Easters and any other Holiday that you would enjoy celebrating twice! I knew no other life as my parents were divorced when I was one. God bless you parents who can make it amicable when a marriage is ending …this will be the greatest gift you can give to your children as they grow. If people could see how deep words can hurt and how long that hurt can remain with someone, I guarantee you would not say those things anymore. Many people unfortunately go through this world being self focused or selfish…they are so hurt that they can’t see past that hurt… I get it trust me! It is easy to be angry, or hate or not want to forgive but in the long run these things will bring you nothing but more pain. Up until I was 19 years old I believed that my Dad was not the man that he was. Yes I loved my dad and knew he loved me but I was brainwashed for many many years into believing that he was not really into me or into having a relationship with me. I remember the sadness that was slowly creeping out from me when I realized that so many things I thought were true were nothing but exaggerations or lies. Shortly before I got married ( I think I was 20) I met my dad at the Fitzwater Station for a burger. I sat him down and apologized for judging him my whole life… I told him how sorry I was for not knowing the truth and for believing so many of the things that I had heard. As he sat across from me with tears rolling down his face all he said was “Thank you” he said ” I knew someday you would know the truth” We did not say too much more as we did not need to. He could not blame me and I could not blame myself…I was a child and children trust & believe even when they do not know any better. That was a defining moment in my life.

I don’t remember when I started to doubt people or not trust people … I think it was very early on in life. When you grow up with so much uncertainty it starts to get to you and you start to question everything. After my parents got divorced there were many men in and out of my life… friends of my mom’s, boyfriends… I had no idea who they were half the time because I was so young. Yet I knew one thing… I could not trust anyone! No one was there long enough to trust…sometimes not even my mom. I remember spending more time with my Nana & Poppop than anyone. I thank God for them EVERY DAY!!! I can’t say that I felt unconditional love many times in my life but when I did it was from them and it was a gift I will cherish forever. Trust was never an issue when I was with them and love was given freely. I knew I was loved!

I think when you grow up and realize how you will live your life you take many lessons from your upbringing. Most of the time you either learn how to or how not to. I have learned many more lessons on how not to and it has served me well. There is a journal that I would write in even before I had kids and I would remind myself of all the things I did not want to do or more like the things I swear I would NOT do if and when I became a mother. As I look back some 14 years later I realize that there are only two things I can truly take from all those things I wrote. Love and trust. I will promise that my kids will never ever doubt my unconditional love for them and they can trust me…ALWAYS!

Right now this is so prevelant…The last two months (almost) there is nothing I can do… yes I can research, read and dig up everything I can find about MLD but truly it does not matter. I need to trust that God has a plan…trust that with all the prayers out there for Eli & Ella he will guide us in the right direction as to the decision we will make for them, to completely let go and let God…

I thank God for trusting me with his babies …I have a long way to go with learning to trust but every obstacle that has been placed in front of me has given me more opportunities to learn this valuable lesson!

Posted in My journey

Eli Thomas

•November 11, 2012 • 8 Comments

This post is one of the hardest for me to write so far. My precious Eli, my 3rd born Son…The one who gave me hell from almost the minute he came out of me. Anyone who has known me from the time Eli was born pretty much has a good idea of the highs and lows  our relationship has endured from the beginning. It was never easy with him but it has been the most rewarding relationship I could imagine…Thanks be to God for patience!!!

Eli came into the world on Sept 3rd 2005..knowing that Dr. D ( my favorite Dr.)was on call that day and I was past my due date just like I was with his brothers I asked him if he could induce me and he obliged. After a fairly uneventful labor, besides the pain from accepting no drugs (yes I am not smart) out he came.  All I remember seeing was that it was definitely another boy! Really?? Well I think I was disappointed for maybe a few minutes before I realized how truly blessed I was to have yet another beautiful baby boy! And I knew I would probably have one more anyway;) Right away I had this amazing bond with Eli and I remember calling Hut saying “this is going to be our easiest one yet” LOL!!!!!!! NOT!!!!!! Due to the fact that I HATE hospitals I tend to leave as soon as the 24 hours have passed from when the baby is born and this time was no different.

The best baby that I thought I had quickly started to show his other side..the head was spinning and it was out of control! I am sure you can relate to having a challenging child or one that makes you cry way too much! That was Eli… I am not one to hide my feelings as I am a very self honest person and boy oh boy did my friends and family hear about my “devil” child. I spent the first two years wearing out my vacuum, hairdryer & my Michael Buble cd (Birds Flying High, you know how I feel was Eli’s favorite) Not to mention the tears that were shed probably 5 out of 7 nights a week. As much as I was not a huge fan of his for quite sometime, he always had his own supporters. My sister-in-law (who was there when he was born…Love ya Meg) and my forever friend Holli…God bless them because they were always on Eli’s side!

Fast forward to shortly after Eli turned 3… I remember the tables started to turn, The child who never seemed comfortable in his own skin or happy to be here in this world, was finally starting to bond with me and I was truly grateful that we had finally gotten to where I wanted to be three years prior.

As time went on there always seemed to be moments that I felt something was not quite right with Eli and I shared this feeling with many…”I just know something is not right with him” I said that many times over, to anyone who wanted to listen. I remember taking him to our Doctor every few months, first for constipation, then just a feeling…of course nothing came up. He was challenging but no Autism, no ADD, no Diabetes…the list goes on and on. Eli was fine!  Yet my heart never let me believe that…it was always a bit heavy for Eli.

As Eli got older I really started to realize how special he was. I always made it a point to teach my kids the most important things in life such as think of others, have compassion, forgive, don’t judge and pray for others. Every night I say prayers with the kids and then we have “special prayers”  These are for all the sick people with either physically or spiritual issues. Friends who have lost children, neighbors and friends who need to keep cancer away. The kids have another “brother” Paul who is from Kenya and we were sponsoring him for quite sometime. Eli will pray for Paul every night that someday we can meet him and maybe he can come here with us. I did not have the heart to tell him that Paul is no longer in the program. Eli still prays and I cry… I really thought God put Paul in our life for a reason and Eli felt that too. Eli was so sad when his bus driver lost his job and he prayed like I have never seen him pray before for Tom. It broke my heart a little every night when I realized how sad he was and I remember how happy he was when he got the news that Tom got a new job! This kid is a gift!!

Having two big brothers there was always something to compare Eli to…not that Eric & Evan were amazing athletes but they could hold their own. Eli on the other hand was always a bit slower, could not kick as hard, seemed to tire quickly and definitely could not run as fast as his brothers (and speed is not the Vivian’s strong suit). He loves his video games and imaginary play and we always thought he was just going to be a bit different from Eric & Evan. Eli, God bless him has ALWAYS had to work so hard at everything that came natural to everyone else. I remember starting to teach him to ride a bike and how he wanted to do it so bad but it was like his brain would not allow him to do two things at one time…he could either steer or pedal but not both. I have lots of guilt about those days…yelling at him “Why can’t you just do it” “it’s so easy” When I look back I can see the pain in his eyes…the wanting so bad to do it but it just was not going to happen. I can’t let myself go there often because I beat myself up way too much!! I remember when Eli was at his Kindergarten field day at the end of the year, I went up to watch and as it was his turn to do the sac race that is when the tables turned for me and I knew something was wrong. As each child one by one got into his or her sac to run down to the cone and back, Eli was waiting for his turn, I watched as he was given the sac and it was very hard for him to get into. Something so simple as hopping down to the cone and back, Eli could not do.He could not hold the bag and hop… it just was not going to happen! I watched him struggle as the silent tears started to fall down my cheek realizing something was just not right. Thank God he did not get too frustrated and just took the bag off, ran with it in his hand and my tears went to laughter. This kid was one determined kid and boy do I love him so!! That is when my real journey started to find out what was wrong with him. Funny, I actually thought maybe it was a mild CP or something that a little Physical Therapy & Occupational therapy would help. Never in my wildest dreams did I think he had a fatal disease.

As I started this blog last night Eli was laying next to me in bed and had his precious arm wrapped around mine and his other under my arm…just holding on…that is why this is not finished until today. I just put the computer down and watched as he fell asleep holding on to me. A moment in time that 6 months ago I may have not paid too much attention to…now I am blessed to feel every finger as they tighten around me, every breath as he falls asleep takes on a new meaning. I pray I continue to appreciate every moment that I am given with Eli (and of course all my kids) and hopefully I will be able to watch him grow into the amazing person that I know he will become.

Posted in Diagnosed, Pre MLD

Ella Rose

•November 1, 2012 • 16 Comments

“I’m sorry Mrs. Vivian but you should go home and put your feet up…you will probably miscarry this weekend”  Those were the words I heard the first time I saw Ella via ultrasound. Now obviously I had no idea she was Ella as she was so tiny I could barely see her but she was there. I went home with my friend who went with me thinking “I can’t do this again…God I am just not strong enough” I had a miscarriage after Eric and it was very hard emotionally for me. You see, they told me I had a subchorionic bleed all around my uterus and it was BAD. Well… I went home and put my feet up until a few days later when I went back to get another ultrasound. I remember the fear that I can still feel in me wondering if it got any better… it DID! Just a little but it was a bit better so we scheduled to come back a week later.

It was the longest week of my life…excitement and fear… and one that I wanted to share with the boys. I wanted to tell them they were going to have a sibling but not if I was going to lose the baby…One night I went to bed asking God if  he would give me a sign that everything would be ok. That night I had a dream… Hut & I were in the kitchen and there was a knock at the door…he answered it and said “it’s for you” I went to the door to see my Father in law (who had passed away in 2001) standing at the door. I was shocked to see him but I could tell he was there for a reason. He would not come in but he said” I just wanted to come and tell you that your baby is fine…and you are having a girl” I woke with a start and could not believe it… My baby would be fine AND it was a girl?!!!! This is amazing!

God has spoken to me through my dreams and given me knowledge since I was a little girl so this dream was not something to doubt…it was just what he said and I knew it to be true!

I had no real fear going into the next appointment as I knew everything was fine so I just started enjoying the pregnancy. It went quick and when Ella’s due date came she was nowhere ready to join the world. As I was induced with the boys I knew I wanted to try to go into labor with Ella on my own. I did! July 12th 2008… After 8 long hours of a rough labor and no drugs Ella made her way into the world at 1:03 pm. She was PERFECT!!!!! She looked just like Evan and was as calm as they come. As much as everyone thinks you must have one child of each to have the “perfect family” that is not true (at least it never was for me) I have to say though…Ella truly completed me as a woman.

Maybe having a tumultuous relationship with my own Mom made me feel this way…maybe I can make up for everything that went wrong in my life with her…I will give her stability, unconditional love… I will be the parent and let her be the child, I will protect her as much as I can and most of all I will let her go when it is time for her to have her own life. I wrote these things in a journal to myself to remind me of what I would NEVER DO to her! I have done this as of now and as long as I have her I swear I will follow through.

I have never asked “why me” but I do wonder what the purpose is… What I do know is that I feel God must think of me to be a pretty trustworthy person that he would give me not 1 but 2 children with this type of illness. I always knew he had something pretty amazing stored up for me. I NEVER thought this would be it but when I think about it, it is pretty amazing! He is allowing me to take care of Ella & Eli knowing that I will fight to my death to find the best scenario for them and selflessly not selfishly. Sometimes the best decision for them may not be the best decision for me… I mean of course we all want our kids here forever but for me this is about THEIR journey not mine and I will put my trust in God that he will show me where their journey shall take them.

As for Ella, since this is about her I can only say this… I never thought she was sick NEVER! Now that I know she is I will savor what time God has given me with her as any time is better that no time at all. All the things I wanted to provide throughout her life I will give her today & I will pray that by some miracle I will be sharing these thoughts and this love with her 30 years from now!

Posted in Diagnosed

Lessons learned…

•October 29, 2012 • 7 Comments

Although the Holidays can be stressful, normally around now I am starting to think about Thanksgiving and Black Friday! Almost three years ago Eric & I started shopping on Black Friday. We would leave before midnight, shop till around 4A.M. then I would meet my friend Jenn and shop from 5-? Last year Evan came along with Jenn’s son & we had a blast. Made some great memories!!! Life to me is about making memories and the quality moments that we have together.

I learned first hand this year all about making some great memories and I learned to savor the moment. This past Christmas my Dad & Donna were home to visit for a few weeks from Florida. (Donna is my step mom for the last 27 years, although she has always been more like another Mom to me) Anyway, they left shortly after Christmas and that was the last time life would seem normal to me. After my Dad got home he felt like he was getting sick…maybe pneumonia… so he went to the doctor who said you should go to the hospital as you have pneumonia. They checked him in and he thought he would be home in a few days. After running some tests they thought they saw something in his lung…maybe a tumor. Not but a week later my two older brothers & I were on a plane to Fort Myers to be with my Dad after he learned he had lung cancer. We stayed for a couple of days and tried to make some good memories when he was feeling up for it. My world was torn upside down! After never being away from my kids for more than one night I would now be spending the next month going back and forth to Florida to see him as much as I could. My brothers and I along with my step sister made two more trips before that last flight there on Feb 9th to say goodbye to my Dad. In the short span of a month, we made enough memories to almost fill a camera card, keep the liquor store in business and we learned lessons to last a lifetime.

I remember the day that we learned the cancer was pretty much everywhere… Tom & Rick were cleaning the lanai and Heather & I were playing Harry Chapin or some country music that my dad liked… we were all trying to keep busy as we waited for him & Donna to get back from the Doctor.  Rewind a few days to the Cat scan… The day of the cat scan my Dad said he was laying there pretty much knowing that the cancer would be everywhere…as he laid there he prayed a simple prayer “Please take all the prayers that people are praying for me and send them to a young child who has not lived his or her life yet” WOW!! How selfless… I can barely type through the tears right now as who would have thought that the prayer he prayed that day, the child he asked for those prayers to be redirected to would not but 8 months later turn out to be one of his own…or actually TWO of his own grandchildren. It breaks my heart a little bit more every time I think about it.

Thank God for that month with my dad…somehow that month prepared me a little bit for the future that awaits. God I miss him so much but what incredible things I learned in that gift of a month. FEAR NOT!!! Yes that is my blog but it is how he lived and how he has taught me to live. He used to say “I worried about a great many things..most of which never happened” SO TRUE!!! I am sure we can all relate. All the things I ever worried about and none of them were Metachromatic Leukodystrophy I can tell you that. The brave face my dad wore in the last month is something I will never forget. He would say what a great life he lived, how Donna gave him the best 27 years of his life, how although he was sorry for things that happened or did not happen, he could not change them so there was no reason to dwell on them. He knew he made mistakes, said he was sorry and tried not to make those same mistakes again. What I learned from him in that month has prepared me and given me strength for how I need to live for today…enjoy the moment…don’t worry about tomorrow for that will worry about itself.

Thanks Dad for giving me the greatest gift ands teaching me  how amazing the human spirit truly is. I remember as we boarded that flight on Feb 9th just a day and a half after flying home to be with Eric for his 13 th birthday what my thoughts were… “please don’t die on Rick’s Birthday dad, he would never have another normal Birthday”. I remember calling and texting Heather every 15 minutes asking if he was still holding on… her answer was always “yes” I would tell her to whisper to him that we were almost on the plane…I bought wifi on the plane just to tell her that we were an hour from landing. “Is he still ok? I remember when Heather said “I whisper in his ear every time you call and he seems to smile” He knew we were on our way and I begged him to wait to go till we got there. When we landed I learned he was stable! YAY!!! He waited! We drove quickly to the hospice and as I walked through his door I broke down and cried… he gave us all a gift and proved how amazing he was! God is GREAT!! Along with Donna & Heather now Tom, Rick & I were there by his side. We had a nice few hours talking to him and telling him we were all there…”its ok to go” As we woke up when the nurse came in to check him in the middle of the night he was ok but the second she walked out the door he left with her. He made sure we were all up and he was outta there! Thank you! Feb 10th…not the 9th and he waited!!

So the month of January into Feb was a month of lessons learned…lessons that I never thought I would need to put into place so quickly after he departed, yet I am grateful for them all. I will live today and be grateful for the gifts in my life, appreciate the support from those far and wide, and know that I have learned more in 2012 than I hope I ever have to learn for the rest of my life!

Posted in Pre MLD

God is Faithful?!?!?!

•October 21, 2012 • 18 Comments

What do we do when we face the unimaginable standing right before us? Something we could have never imagined happening to us is now barreling down like a freight train headed right toward you. What would you do??

In my almost 40 years of life I have had many many chances to decide if I would follow God through bad times or if I would stray and be angry about all the wrongs I felt happened in my life. It’s not God who leaves us…we choose to leave him, ignore him or not acknowledge him. Now, maybe at Christmas we think of him, maybe someone you know needs a prayer and you utter his name before going to bed…who knows…we all have our own journey & I judge no one! I mean normalcy is a good thing and you get wrapped up in it sometimes…

I knew from a very early age that I had an amazing bond with God. Take that however you would like but what it means is that I knew I would try to live a “christ like” life …believing that everything I did would either help or hurt someone and I would try to always help rather than hurt. That has become more prevalent the older I get and sometimes it has hurt me…actually many times it has hurt me, yet I can not change who I am. (“Just because you treat other people a certain way does not mean that others will do the same”) I heard that over & over again from Hut. I always wanted to make sure that if Jesus was standing right in front of me,  he would be proud of what I just did or said. It was never really about pleasing my parents or grandparents or anyone for that matter but it was about making God proud of me.

Now here I am faced with the unimaginable and I have to admit I have questioned…”really God?, you seriously think I can handle this shit, you really think I have MORE lessons to learn?” Although I do not feel I have too much more to learn, I do see the good that has come of this already. Romans 8:28 – And we know that in all things God works for the good of those who love him, who have been called according to his purpose. YES!!! He will make something good of this because I have loved him and will continue to do so!!!

 

Posted in Diagnosed

Here we go again

•October 19, 2012 • 21 Comments

After a few days on the rollercoaster I decided to step off and just focus. I refused to allow myself on that ride again! My focus had to become so centered and so present. PRESENT… I never believed I could live there yet the last almost four weeks I have been no place but the present. Actually I lie…fast forward to this week… I was at the bank and I saw a precious little girl with deep brown eyes like Ella, she was probably around seven years old and as she looked at me with those eyes I felt like I was looking at Ella. Will she ever be that age? Will I ever see her grow up? Will she go to the prom? Will she ever have a first kiss? The questions kept going until the tears started and I had to force myself to just STOP!!! No one is guaranteed tomorrow. Not even very healthy people…anything can happen. My grandparents who were two of the most important people of my life would always use the phrase “God willing” I would say “Nana, can you come over next week?” She would say “God willing” AMEN!! NO ONE IS GUARANTEED ANYTHING and we have to remember that. Yes it is more prevalent to someone like me with a “sick child” but we should all remember that.

Rewind to a week and a half ago…The dreaded day was here… I had to get my other kids tested for MLD. I had wrestled with this decision for at least a week and just decided there is some kind of comfort in knowing; whether good or bad at least there was an answer. The kids took the day off from school and we all went to CHOP. We should have been there maybe an hour but it turned into a four-hour trip. Needless to say it was not my day! After we finally saw the doctor and got all the blood work and urine done on the rest of the kids we were finally on our way home. (oh, almost forgot, they took even more blood work on Eli to test to see if any one of his siblings would be a good match for bone marrow) Driving home I got a phone call about Eli’s urine (the true diagnostic test in determining if your child has MLD) They test the urine for sulfatides and if there is sulfatides then it is a pretty open and shut diagnosis of MLD. YES Eli’s urine had sulfatides…Wow! ,That’s  it…the last hope I had, was now washed away. Part of me would have sworn that there was no way he had MLD. Not because I am like “this could not happen to me” because that is not me, I just did not think he matched the disease. I was numb yet again… I could not take much more.

God bless friends because I went straight to a friends and downed a glass or two of wine before heading home to make sure Hut knew the reality of the situation.He was one who kept the hope until the very end…he refused to believe until every single test was back. I did txt him earlier but I assumed he did not read it as he seemed ok when I walked in the door. Well, I told him and he was shocked…mabe not shocked but any hope he had, was now gone with mine.

As we went about our weekend we thought it would be a week till the other results on the kids came back so we just tried to be “normal.: Baseball games, party at a friends, and more baseball. Life was good this weekend! Monday came and normalcy continued…it was nice to not have a doctor appt and to not answer the phone when Duke or Pitt called. I just needed a break!! That break ended quickly as I walked in the door Tuesday afternoon. The phone rang and Eric answered it. As he handed me the phone he told me it was CHOP. “No, the results can’t be back yet” “don’t give me the phone… I don’t want to know” As I got the phone everything slowed down once again. I could see Eric in the dining room, Evan doing homework at the table & Eli & Ella running around. I heard “Mrs. Vivian” I could tell immediately I was on speaker phone which I did not like. Like they needed others there to witness  giving me the bad news…did others need to hear my reaction…did they want to hear the teats and the anguish in my voice? I will never understand that phone call. She said “we got the results back of your children and we wanted to let you know that your Eric & Evan are carriers of the disease” That’s  all I needed to hear… I think I fell to the floor as I knew what was coming next. “I’m sorry Mrs.  Vivian but Ella also has it” I just remember almost passing out, getting back up then falling back down. I could not imagine this would ever really happen. Not one but now two kids with this horrific disease. As I felt like I was hyperventilating I went outside into my garage and called my cousin. I could not speak… I just said “Jenn” and cried. Then I proceeded to kick everything in my garage and break a few things that I don’t even remember breaking. Not but a minute later my poor friend showed up. I can only imagine what she was thinking when she walked in on such a life changing moment. I actually felt bad for the people in my life who loved us so much…they were so sad for the kids/us and it broke my heart.

Fortunately or unfortunately I did not allow myself much time to feel sad as I needed to refocus and come up with a plan!!

Posted in Diagnosed

Ride of my life

•October 17, 2012 • 14 Comments

As you can imagine, it took me quite some time to deal with the fact that this was real and not a nightmare. It did not take long before life started right back up and fortunately for our family at this point Hut & I were the only ones who knew anything. We knew we had to talk to Eric & Evan but when? How? How do you tell them that their brother was just diagnosed with this horrific disease that would probably take his life? First I had to do all the research I could on Metachromatic Leukodystrophy. I have to admit, it was SCARY!! Fatal, crippling, blindness, seizures, vegetative state and the worst..no cure. These are just a few of the horrible things I read just in the first day or so. Through all of this, I was ignoring one of the most important things though…THIS IS GENETIC and all my kids needed to be tested! I just could not deal with this quite yet.

In the following days some great people introduced me to some well-known doctors at CHOP. After receiving an e-mail address for one of the best know metabolic doctors at CHOP we soon began corresponding about Eli. He was very quick to share that through MRI alone you CAN NOT diagnose MLD. “It could be one of 1000 things” Those were his words and I clung to them like they were glue! He recommended that we make an appointment with one of his colleagues immediately. “Thank God” I thought maybe we will find out it is something else. We quickly got in with another metabolic specialist along with a genetic counselor. The day of our appointment I remember checking Eli in thinking “maybe this is a mistake, please God let this be a mistake and I will have learned so much already” The doctor was so nice and immediately she also informed us that it could be over 1000 different things! WOW!! She is saying the same thing that the other doctor said! YES!!!! She examined Eli and although she noticed the slight tremor and some other minor things she thought that in her opinion this was NOT MLD!!!(here come) I let my guard down for a moment and the tears fell. I quickly stopped when Eli came and gave me a hug on seeing me cry. She was so sure it was something he was born with or a mitochondrial disease that she ordered another nine vials of blood to be drawn. We walked out of her office and headed to the lab where I looked at Hut and said “What do you think” He refused to get too high or too low as that is how he has always lived his life. (Lucky him) I tend to be just the opposite. God Bless Eli, he watched “his blood get sucked” and we were on our way for an ice cream at the gift shop. Here comes Toys R Us!

On the way to the store to get yet another wrestler I texted our family doctor to see if the blood work was back (the blood work is another diagnostic tool used in testing for MLD. There is a specific enzyme they are looking for; or lack thereof) This is the blood that was taken when we were at Dupont. He txted back saying that he was with patients. I got a bad feeling. As we were walking out of Toys R Us my cell rang and I threw it to Hut. I could not bare to answer and hear the news. Eli & I got in the back of the car and as I was taking his wrestling belt out of the package I looked at Hut and listened…”yes, o.k., o.k., I see”, I remember just spitting it out “DOES HE HAVE IT?!!!! He just shook his head yes. The world stopped …just an hour ago we were being told that our Son probably did not have this disease and now Yes he does!! Seriously!!!!! What the F%#@!!!!

We got home and I was still in shock…life was good for Eli & I wanted to keep it that way for as long as I could. Time to get my ass in gear and do as much as I could to save my son’s life. I WILL NOT STOP!! I could not imagine how strong I would have to be to deal with this but I would try…little did I know, this was just the beginning and the strength I thought I had would have to double in the next week.

Posted in Diagnosed

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