Fear Not

It’s funny the things that I have learned to enjoy so much more now than ever before. Tonight I stopped on the side of the road by my church to witness the beautiful sunset. Two nights ago I saw a sunset driving up 422…as we were driving up 422 we pulled over, I told Evan I wanted to take a picture…as we were waiting for a lull in the passing cars, Evan was saying that the sunset looked like a river with mountains behind it. I put myself in his mind and I saw the same thing… the beauty of the simple things that we take for granted every day was right in front of me and I was taking it all in.

I think in life it is natural to take things for granted…Every single thing in life can be taken for granted. The electric when we are without from a storm, clean water …when you are watching a special about so many children in the world who go without. Shoes… check out Soles for Souls to realize just how many go without such a simple thing as shoes. Food… do you know that according to CNN obesity is now a worse crisis than hunger?? We obviously have taken food for granted…Smaller things are taken for granted too… a smile, a hug, a sunset, a kiss, maybe just the touch of your child’s hand as they are falling asleep next to you.

Funny thing for me right now is I am trying to enjoy everything and, as one friend says “find the balance” . I am trying to find the balance of so many different things and for anyone who has ever been there they know it is not easy. I want life to stop or at least slow down so I can truly enjoy every single moment that comes my way.

Christmas is almost here and I have nothing done (except my house thanks to some amazing people) I am normally so on the ball with this stuff but for some reason I just don’t seem to care this year. No tree yet…hopefully this weekend…no card done…oh well I’ll get to it. To be honest I don’t want Christmas to come. After Christmas the New Year will be here and how could the New Year be any worse than this year? Well, it could be and I don’t want to go there. I want to focus on today and that is it.

This week I found myself in Staples buying a voice recorder. As I was searching for the best one I remember asking the guy about voice quality…I just love Eli’s precious voice and I want to be able to hold on to that forever if…..the if I do not want to finish but I am sure you get where I am going. Which one could record the most and can I transfer it to my computer..…really? Am I really preparing myself for the day that I might never hear Eli or Ella’s voice again? THIS IS NUTS!!!!! Yet, here is another thing I have oh so taken for granted…their cries, laughter, screams & joy that has come from their mouth. The calls of Mom, mommm,mmmoooommmmmm…over and over till I answer them. What a wonderful word that I will NEVER take for granted again. I am prepared! NO REGRETS!! That is how I live my life.

At times when I look at Eli & Ella I really can’t believe they have this dreaded disease. They are both these perfect little people in these perfect little bodies. Every morning that they wake up, it is a true gift when they come down as happy and as healthy as they went to bed. Phewww…it should be another good day. The disease is not winning…THEY ARE… and I believe they will continue to win!

Posted in Diagnosed

As we move through life I know that so many of us just want to fit in. Whether we admit it or not everyone wants to be liked and too many of us care what others think about everything in our lives. I see it all the time…our clothes, car, house…actually there is no limit to what we feel about wanting to fit in. I remember when I decided to have kids, I just wanted them to be in a stable place & I wanted them to NOT worry about all the things I worried about growing up. As long as they were in the same school they would be happy, have great friends, enjoy their life & hopefully feel like they belong.

Imagine 7th grade…first girl boy party, first boyfriend & first kiss…it was a great night. It was the first time I was at a school for a second year in a row. I had met some great friends and was looking forward to a fun year. Halloween night I was picked up from this party I was speaking of and I was actually excited for school to recap the fun night. Little did I know that after that party I would never see those kids again. I moved that night unexpectedly into my dads and in that instant so many things changed. Just when I believed I could finally belong it was stripped right from under my feet. Time to start all over…not only was I without my mom but I was in yet another school. “I swear I will never have my kids go through this” I remember thinking this as I was growing up even though I never really got upset. You see I was a people pleaser… never wanted anyone to be mad at me; especially my Mom or Dad, so I just pushed any sadness I had way down deep.

As I look at my kids today, I hope I can teach them that it does not really matter how well you fit in. Yes it seems so important in 5th or 7th grade…maybe even 11th, but eventually they will learn that we make our own future and who we feel we belong with when we are young may not mean anything as we get older. All the things I thought were so important aren’t quite as much as they seem.  I do have to admit when I see the same kids walk through this door that walked through  5 and ten years ago it always puts a smile on my face. The bonds that we can make when we are little and as we grow can be with us forever if we are lucky. I see that with Hut…his core group of friends are the same friends from years ago and I have always been envious of that.

At 40 years old I never thought that it would be now that I would feel that sense of belonging or fitting in…maybe just being a part of a community. The blessings that have come from this disease cannot be overlooked. I share with you what I feel they are as they come up but one of the biggest has to be feeling like I am part of a community and that they are rallying around us every turn we take. What God allowed to be taken from me as a child he has put into my life ten fold as a 40-year-old woman through this terrible disease. The gratefulness  that I feel is such a blessing when I get an email, txt or Facebook message …or maybe I see someone out who tells me they are praying for my babies…Wow how awesome!! The amazing fundraisers done by people who don’t even know us, by people who do know us, by schools, preschools, family & friends have blown my mind every day and there are simply no words to express how grateful I am as a mom. This is where I give more credit to God because although we have been dealt this very frightening blow he has opened so many doors for new relationships, new lessons to learn and most importantly he has shown so many where we need to be…let’s get right with God. Get on our knees again…believe again…have faith in something bigger than ourselves. Even if Eli & Ella are not healed that does not mean that he is not a loving God. He has a plan and I have faith that this plan is bigger than I could have ever imagined!!

So what does fitting in mean… well I always wanted more for my kids than I had and I think we all feel that way but I am proof that even if you don’t feel like you fit in when you are young , even when you feel alone and wonder how and when you will make friends, just be patient because it may be later than you ever thought and it also might be better than you ever believed. MLD sucks so bad but I am so grateful for all of the awesome things that have come from this already and I hope to truly change the world through our experience!

Posted in Diagnosed

As I sit here I wish I could stop time…

The last 4-8 weeks my life has been pretty normal…sports, school, arguing and no doctors. There have been no major decisions that I have had to make and I have tried to enjoy every minute of it. As the next two days are right in front of me I sit here and the fear starts to creep in. I mean the serious fear that leaves you unable to control yourself at times…where the tears flow and you don’t know how to stop them. Sometimes I don’t want to stop crying as it is the only time I feel like I am free. When you cry you are free from fear because you are letting it out and it goes away…even for a moment.

People tell me I am strong… I don’t believe that… I am weak and only through God’s grace am I strong enough to get through this. The last few days I have cried more times than I care to remember. Not over one particular thing but EVERYTHING. There are too many questions but I wonder why someone who has already learned so many lessons in life has to learn more. I have learned to forgive (over & over), love, trust and I have even learned to have faith…what more could I have to learn?? Here is someone who knows so much about alternative therapies and I have so much information about so many diseases yet my kids are faced with a disease where there is no real alternative treatments to even help?? I just don’t get it…

I am weak… I do not want to be here at times… I wish God would let me not wake up…that is my reality and you would feel the same way. I may be weak but I am NOT selfish and I would not hurt my kids any more than they are hurting now or will be hurting in the future.

I know why I had an amazing spiritual experience when I was 4… it was all for this moment… or it was all for this life that has been so challenging for me. I know that God is here and I know that he is in total control. This does not mean that I don’t shake my fist and wonder why …NO… I sit here tonight totally helpless, not able to even contemplate what the future holds, what the plan is…that is why I want time to stop but it can’t and it won’t. I have let go…I am not in control and have to learn to accept that.

Just like so many of the Psalms of the Bible we hear crying out to God “why have you Forsaken me” Yet… how do they end? They end with hope…Hope that there is something greater…that there is a God who will never leave us or forsake us.

Posted in Diagnosed

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

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

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

“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