Fear Not

I wonder who I am sometimes…am I the one with the great faith believing in Gods plan no matter what or am I the fearful woman who still feels like a young girl wishing this was all a dream…some days screaming out at God wondering how this could really be a part of a bigger plan. It seems as though the doubting me is the one I seem to see more of lately. I don’t like feeling that way but it is something that I can’t fight. I have been trying to embrace every feeling and emotion that I have lately hoping that if I feel it maybe it will help get me one step closer to acceptance of what lies ahead.

I remember being at Disney looking around at all the families you see and I couldn’t  help but wonder if they are living a life like I used to live…a life filled with normal worries about sports,  is the house clean today, can we go on vacation this year and where to. Actually I don’t really remember what I used to worry so much about before Sept 20^th. I just know now that I will never have that type of normalcy again for the rest of my life. It will be a new normal and I am not looking forward to it. When I thought my life was hard back then it was but I would give anything to get those days back. I know for me personally I find myself getting caught looking at a picture from a while ago and I get lost in that…lost in what life used to be like before my life was changed forever.

Slow torture is the only way to describe what I feel like I am going through waiting for our next visit to Milan. In late November we found out they would see both kids to evaluate but they would see them in Feb…ok time to wait…2 and a half months…lets believe they stay good till then. As Feb 8^th came upon me I was so excited knowing that Eli seemed GREAT! Almost better than diagnosis Month. Everything went great but now we have to wait another two months …OMG… I almost can’t take it. Two more months of waiting, knowing something could change… I mean it is MLD, it is progressive…of course it might change. Now I have ANOTHER two months to wait, hope & pray. A slow torture as I said, knowing that if they had the vector done in February they would have taken them both but now it’s back to more waiting.

So now as I wait I try not to think of how it will go in Italy. I try not to think of what they will go through or what it will feel like if I have to send Eli home on a plane with his dad. Unfortunately those thoughts do creep in here and there but then I try to look at my healthy kids today and know that for any of us all we truly have is this moment that we are in RIGHT NOW. Gosh that is so much easier said than done.

I saw earlier this week that Kindergarten registration is this month at Oaks. I remember how excited I felt at the thought of Ella going to Kindergarten. As my last child she is also my most “advanced” and by advanced I mean she can color a mean picture and stay in the lines too!! She is so ready and so was I.  I could finally volunteer for EVERYTHING because they would all be in school! Eli and Ella would be sick of me because I would hopefully be in their class way too much. So as I let the feelings of sadness soak in about another dream not being as you thought it would be I felt sad and moved on. Ella will not be the only one I am sad about… I am going to miss Evans confirmation, I will miss countless of baseball games and if you know me you know that is a very big part of my life.  Eric is now 14 and trying to figure out where he fits in and how his life has changed being the oldest. I am trying to plan little things for the boys when I am gone so they will know I am always thinking about them. Some might say you can’t think of all of these things, they will just make you sad but I say you have to acknowledge everything, feel it and then you can put it in its proper place. Of course the most important place for me to be is in Milan and that is all there is to it! Someday it will make sense to all of us.

Almost 6 months ago…wow almost a half of year has gone by and I can honestly say that I am a totally different person and although I have my faith I still HATE this situation, I still scream at God, I wonder why me, I doubt, I fear, I cry and I wonder some days how in the world will I do this.

As I look at all the other amazing MLD families that I have “met” out there I say to myself “They are doing it” and they are doing a great job!! We are all on different journeys but we are all in it together and I am so grateful for the strength that I gain just from knowing them.

God knows I will keep fighting and even when I have my bad days (which seem to be more and more) I still know that I will take one step at a time and not look back…he will carry me forward even when I don’t want to go forward anymore.

Posted in Diagnosed

I sit here on the way home Milan and I feel the same as when I flew here. The not knowing has to be the worst feeling in the world and now we have to wait 60 more days! 60 days to try to keep Eli stable from this dreaded disease to keep him healthy and to slow or stop,his neuropathy. The pain I feel is indescribable right now. The thought of coming this far in five months and not making it the whole way is enough to spin me out of control! To know if he is not accepted he will essentially come home to live out his life is enough to make me sick to my stomach.

Every time I close my eyes I see the same thing… Me knowing there was something wrong with him for so long … Maybe I pushed too late….. Maybe god was giving me signs but I followed them too late. If I just pushed two months earlier maybe we would be in Milan getting treatment right now. This was my one job….  I am not a lawyer,
teacher or any professional for that matter. All I ever wanted to do was be a mom…. This was the biggest responsibility I was given and I feel like I failed
Eli. People may think I am wrong for thinking this but no one truly knows how you would feel until you we’re traveling a journey like this.

I have learned that you can’t barter with God. I have tried too many times in my life and it does not work. Please God make my anxiety go away…. Please God let me have a better relationship with my family…. I will do whatever you ask just get me through this moment. I remember being in this position many many times in my life through many different struggles as I am sure we all have….BUT it does not work. You can’t barter with God and he’s not taking bribes. So where does that leave me?

Some days it leaves me angry, having more questions than I know I will ever get answers to…this is not a fun place to be. I remember reading once before something written by the poet Rilke” Be patient with all that is unresolved in your  heart. And try to love the questions themselves.  Do not seek for the answers that cannot be given.  For you wouldn’t be able to live with them.  And the point is to live everything, live the  questions now, and perhaps without knowing it,  you will live along some day into the answers.” I love this! We want answers so bad but might not be able to even comprehend them or what them mean. I will keep asking and hopefully someday I will understand a little more than I do today”. On the other side there are days when I seem to get lost in life and seem to forget even for a moment  what lies ahead. Those are the best moments where I am just present… Thank God for allowing me to enjoy the present moment more now than I ever have.

Now it is a week later and I have been home from Milan, off to Mexico and home again only to be leaving for Disney in less than a day. I have to say I am bit overwhelmed and not as excited as I should be but nonetheless we are going. Ella has been excited for years about Disney so she should have a dream or two come true while we are there.

When I have a second to think about how I will feel when they both get treated in Milan it will be an excitement I am sure I will not forget…another thing that I will never forget is how it will be from the collaborative efforts of so many people who love my kids and who have gone above and beyond what they ever had to do. Honestly it is very emotional for me to see everything that Eli’s teacher does for him at school to keep him strong and smart also his gym teacher, his counselor and countless others who make it an amazing group effort! My friends and family who check on us, run errands for us, do things with the kids…the list goes on and on. We are so lucky! I can’t wait to celebrate with all of you when the kids come home healthy at the end of the year!!! (POSITIVE VIBES PEOPLE!!!!!)

The most important thing for me is knowing that through my darkest moments that I have had recently God has carried me  through them all! On days when I just can’t picture the future and what it will look like or when I just want to crawl into a hole and not come out I have some amazing friends praying for me and lifting me up so I can be strong for tomorrow. Thank you to all those friends who are loving me through this and thank you to the God who will never leave and will give me the strength I need EXACTLY when I need it!

Posted in Diagnosed

On this day last year I was in Florida preparing to leave my dad for the last time, enjoying his hug and making it last as long as I could…knowing it would be the last hug I would get from him until we meet again someday. Just a few weeks before we found out he had lung cancer and just not two weeks before we found it had spread everywhere. WOW!! What do you do when you find out you may only have weeks with your loved one?? You live, enjoy every moment and you make as memories as you can. That is what I did along with my brothers, step- sister and step-mom. What happened in the last few weeks of his life and how my dad handled himself as he was dying has prepared me in many ways for what would lie ahead in my life. I have learned to appreciate the different relationships in my life and all the great things I get from each one…I have learned that no matter how much we worry it will not change anything…and most importantly I have learned that I am much stronger than I ever believed myself to be and I can pull strength from somewhere even when I think there is none left.

The last month has been filled with many emotions…figuring out when we would be heading to Milan for evaluation, hoping and praying Eli would remain stable, trying to keep life as normal as it can possibly be and finding a balance between everything!!!  some days I don’t know how to do that as life seems to be slipping away at times.

The last 4 and a half months has all been for the journey that is about to start. From the day we came home after hearing Eli would die from this dreaded disease after being told there were no options out there for MLD, to deciding NOT to let the doctors words become a truth in our mind this has been the journey of every high and every low. Make-a-wish was the most surreal thing I personally have ever experienced. It is hard enough to accept that your child (children) are eligible for a wish but then to witness the kindness and joy from the people from make-a-wish,  Dave & Busters and the WWE it is like getting on and off of that emotion rollercoaster over and over. Eli’s smile when he got to arm wrestle Sheamus and race cars with the WWE Superstars was enough to make anyone feel the magic of the night. There were many moments over the weekend that I had to step away and shed a tear or two. Some days I have to admit I still can’t believe this is real and not a dream. I cried out to God more than once on that trip…it’s not fair…I love you so much and have always been proud of that. I have shared your love and I have forgiven over and over again…ALL FOR YOU!!! All I ever wanted to be was a mom and now the possibility of having 2 sick kids is staring me right in the face, shaking me to the core.

This week will no doubt be the most important week of my 40 years of life. I have asked for prayers and asked for people to believe they have both already been accepted  but truth is the whole thing is out of my control. God knows what lies ahead for both of them and I have learned to give it all to him. I want so much for his will to be mine but if it is not it can only mean that he has something else in store for Eli.

Tomorrow I will share my story of faith at a Community event that some awesome women have put together for our community. As I was thinking back to my relationship with God and how it really started I can always remember thinking that God had a BIG plan for me. I guess God was listening when I asked him to use me…when I told him I wanted to make a difference….this must be it and I will try to see every good thing that could possible come from this. As I was recently reminded and this is exactly what I mean …John Chapter 9 Verse 3 ³ “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. AMEN

Posted in Diagnosed

For some reason lately things seem to be getting worse for me….I can’t really say why either. Maybe it is the gravity of the situation, maybe because now that the Holidays are over & the only thing ahead of us is the thoughts of Milan… I don’t know.  I just know that at times I feel this indescribable pain that I don’t know how to break away from and to use words that my cousin just recently txted to me … I feel like everything is closing in on me.

I think when Eli got diagnosed I was numb and then with Ella I just felt determined…first determined to get as many smiles and laughs as I could out of them then determined to not give up and do whatever I could to try & save their life. I don’t think I ever felt angry or mad at God or questioned I just had to focus and not let anger get in the way. Why now is it different?? I do have an idea…

The unknown is not just about their disease and what the future holds but it is also about tomorrow and the worry that comes every day.   I wake up every day with one main focus… to see how Eli gets out of bed…to see how he holds his spoon during breakfast. Does he have a tremor… is his speech the same…can he run up the steps like he usually does? These are just some of the things that run through my mind even before he leaves for school. I think I am just waiting for the other shoe to drop and it scares the shit out of me. God please don’t bring us this far with Eli for it to get worse now!

Some people know what they want to do when they are young or in high school…some people know that they want to go to college and be a career person. Me, well all I knew was that I wanted to be a mom and I knew that from a very early age. Kids were so important to me and I knew I wanted at least 3. (Until Eli came along that is…I could not end with a kid who cried and whined like him so I had to have another;) So….the thought of leaving Eric and Evan for such a long period of time is almost too much for me to bear. The thought of not being here to kiss them goodnight, pack a lunch, snuggle or make an amazing waffle and ice cream dessert just leaves this pit in my stomach. Not to mention baseball season…it may sound silly but I have coached all the boys in baseball (up to a certain point of course) and it is one of my greatest joys. I have met so many awesome kids and parents and I look forward to the summer days and nights at UPLL.  It is like family there and it is also another thing that you just take for granted….another simple thing that I will miss out on this summer.

Sometimes I feel bad for feeling sad… I mean so many other parents have gone through the same thing, so many have gone through worse… I should be grateful right?? I am very grateful…grateful for the support and love of friends, family, teachers, neighbors, people who don’t even know us…we are blessed. Yet there is a but… I am terrified to watch my kids suffer, to watch from the sideline as they will be poked and prodded to hopefully save their life or maybe just prolong it. People ask me “Did you tell Eli yet? Do they know, how will you tell them” I can’t answer that and I will not even really let it cross my mind. I might never truly tell them the WHOLE TRUH… I mean why? What good can come of it? I will cross that bridge when we absolutely must!

There is a movie called Life is Beautiful…I did not see it but I remember many years ago when I saw pieces of it thinking that if anything ever tragic happened in my child’s life, I would do what this father did in this movie and shield my child/children as much as I could from the reality of the situation. Funny thing is, that was 16 years ago and I still remember thinking that when I saw the movie pre-views. As much as it pains me beyond belief that my precious Ella has this dreaded disease too there is positive that might just help us all in the next year.  I am sure there will be a bond that as they get older (God willing) no one will ever be able to touch or understand. They can at least know that they are not alone in this and that their sibling has to go through the same treatment. I don’t have to say to Eli that he is alone and everyone else is fine. That might be a blessing and just might help them both through this.  The day that I/we have to tell them that something is wrong with them is a day I don’t want to think about …how do you explain this to a 7 yr old let alone a 4-year-old? So I will let them enjoy life and not say anything until I absolutely have to. As of right now they think we are going to Milan on vacation. YAY VACATION IN MILAN!! Woo Hoo!!!! Eli is so so excited he will have no school!! Hey, I am trying to look and embrace the positives in all of this…that is one of them …for him anyway.

Tonight I go to sleep with one thing on my mind…something another MLD parent told me just tonight “ And remember there has to be a reason why you were chosen to lead the way on this journey. The world is too perfect for mistakes” Amen Kim! You rock and you turned me around tonight when I really needed it (along with some other angel friends) One step at a time… I have to keep telling myself that!! World closing in or not there is no choice … I must press on. Thank God for so many amazing people who help me do this on a daily basis. Xoxo

Posted in Diagnosed

As I sit here in the wee hours of the night I look at the calendar on my computer and can’t believe that tomorrow is Dec 20^th. Three months since diagnosis date of Sept 20^th. They say your life can turn on a dime…I know I felt like most of you until that day…”that happens to other people not me”. I have enough shit in my life so God would never allow anything like that to happen to me. Well….NOPE …don’t ever think that because you never know how strong you are until strong is the only choice you have.

Just a few nights ago I remember doing laundry and I simply lost it. Every emotion that I never dealt with three months ago I was now facing. I remembered hearing the words “he might live a year, maybe ten…we just don’t know” It rang again and again in my head…I just kept thinking this is true… I am now living it and it is crazy! “No cure, treat the symptoms,” All these things I was now faced with as I was looking at Eli’s undershirts wondering if he will ever wear the hand me downs of his brothers…”God I just don’t understand!”

So… I feel that I have been pretty good the last three months… I mean I lose it here and there but I expect that of myself. Of course things can creep up and for no good reason… tonight  was one of those nights…I came home from starting my Christmas shopping and I don’t know what happened but something set me off…  I got upset and went upstairs. Now here is the funny part…I recently got a tattoo that says Fear not and here I am fearing EVERYTHING!!!  Will Eli stay stable, what about chemo, will he eat enough, can I fatten him up now…and the biggest question… how in the world do I tell him he is sick? This just literally breaks my heart. I can barely type it without crying.

I saw my friend Polly tonight and she told me she made a book of pictures for Eli & I am sure for me also for when we are in Milan. Pictures of Eli & his best buddy, pictures of this baseball season where I was so lucky enough to coach him. I just can’t imagine leaving… but thank God I will have these special memories to take with us to keep on keeping on. I can’t imagine what I will need to keep me going being so far from my family.

Eric & Evan do not want to go to Milan right now so I am letting them make theat call. They both want to play baseball this summer and I get it. I just know that I do not want them to regret this decision as they get older. As I say all the time… they will be in therapy for something as they get older… I just don’t know what it will be for yet;)

Here is brings me to the next problem…how can I leave my Eric & Evan for 6 months??? Maybe I will see them for a week here or there but to be without them for so long will be like missing a part of me!! How to be separated from your babies for all that time is beyond me.  I remember when my dad got sick this year, it was this first time I had left the kids for more than one night. Although it was a challenge, we face timed every day. For the month of January I was back and forth 4 times and it was quick…thank goodness! I am scared of how much I will miss them.

These emotions are hard… some days I do not want to do a thing; I do not want to talk to people, or answer emails… I barely want to talk to my own family…I don’t want to have to put on the strong face when all I want to do is crawl into a ball and go in the corner.  God just help me on this journey…that is all I can ask for. Let me love these warriors to the best of my ability

John 14:27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

May I remember these words spoken …and feel blessed that I believe in a plan… in God’s plan. He has brought so many AMAZING people into my life through MLD …so many amazing people who are praying for  Eli & Ella and believing in them  too!!! It may seem hard to believe but I feel so blessed. So blessed that so much good has already come of this disease!

Posted in Diagnosed

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