tick tock

•June 13, 2013 • 23 Comments

“It might be the smallest of things that makes you crack” I remember when my cousin said these words or something along this line to me about this whole experience. I remember wondering if that would happen… I remember thinking so far so good and although I have my moments, I think I have been very focused and very determined. All that changed during a little X-Ray and  I realized that would be my “cracking” moment … a very small one where this whole disease and what Eli is going through seemed to come crashing down on me.

Over the past few years my relationship with Eli has changed so much. He went from the child that I cried about A LOT, screamed about A LOT and wondered about A LOT to this child who loved to snuggle, loved to laugh and loved to think of others. It was such an awesome transformation over the last few years and I really felt that the two of us had turned this awesome corner with our relationship. Ahhh ..he would not be my “devil” child forever …what a relief I thought.

After MLD reared it’s ugly head and we went through everything we did to get to Milan I had time to think of Eli and how amazing he has been this whole journey so far. I had time to really appreciate how strong and brave of a young boy he was and is …time to wonder if he is here teaching so many of us lessons that we might not have otherwise learned. I have become more protective than normal and have tried to be as gentle as I can with him emotionally about everything that he is going through. I have learned to have more patience than I EVER thought I had. I have also learned that sometimes you just can’t make it better no matter what jokes you tell, what dance you dance or how many times you let him beat you up. I don’t like sugar coating things for him or not telling him the truth…he has known the cold hard facts about this treatment, what will transpire and how long we will be living in the “box”. He knows about his 3, 6, 9 & 12 month checkup but most importantly he knows I will be right by his side for it all.

Eli’s hospital stay started very uneventful and after we learned all the rules to keep him safe and germ free we were ready to get things started. Basically what Eli had (gene therapy)is equalivelent to a bone marrow transplant (yet using his own cells) so the same rules apply. Change your clothes before entering the room, (there is a changing/locker room…anything that you bring into the room has to be in a plastic bag and spray cleaned with disinfectant. No paper products at all or cloth bags…really anything that can collect dust/germs that can’t be spray cleaned. There is a closet for all of our belongings and food from home which has to be unopened all pre- packaged food. There is a little fridge and a pull out bed for whoever stays with him. It is a great room all things considered. The first few days were very challenging because he had his lumbar puncture and his bone marrow harvest and he was very sore after he woke up. This was followed by chemo which started a few hours later. On a side note I remember watching that first infusion going in and knowing all the harmful toxins in there and for a second I still could not believe that this was our life. He tolerated the first chemo well and it was a two hour infusion. Four hours after it ended the next one began. (14 all together) I think with every dose there came another worry…”will this forever damage his organs, will he be sick, I can’t believe he will be bald soon” and of course once in a while you can’t help but wonder “why my kids” That feeling doesn’t come often because no one is immune from anything in the world we live in and I know that. The anti-seizure drugs were the worst…OMG …loving little Eli was now saying “I hate you” “I don’t want you to be my mom” “I just want to die” He told Hut he wanted to break his arms and legs…I have to admit …this was the toughest time for me. He would look at you like you did not even know him and start yelling at you. Thank goodness they lowered his dose and my Sunday he was totally off and Monday he seemed to be himself again. PHEW….what a long week!

It has been so nice having company from home. Michele, now Margie…next week my cousin followed by my brother Rick or sister in law then Holli in early July. It is not only great for us but Eli loves to switch up as everyone brings something different to the room. We are so grateful for everyone who is doing this for us!!!   We spend most of the time playing games on his I pad and watching movies. It is so hard to look out the window and see the beautiful weather knowing he will be in here most of the summer. I try to keep the blinds closed a lot so he is not wishing he was outside. I think it will be easier with Ella during the colder winter months because we will not be missing anything fun! I found a bowling game that we can clean so I bought that for him and it is good for his muscles. We throw the ball and kick it too. Not to mention throwing the ball and soft pins at Federica the other day. She is just one of the awesome nurses that we have here that loves Eli (or Thomas as they call him…his middle name) just yesterday I found him a plastic magna doodle so we can play hangman and he can practice his writing. (He is thrilled…NOT) The Doctors and Nurses are great and so many speak English…they don’t think it’s very good but I do. They visit Eli when they are not his nurse, they teach him how to play candy crush and they take great care of him! They are in for it with Ella…LOL!

Eli has been doing great but this week was having a lot of back pain. My gut thought it was from doing too much and his back was probably sore from the bone marrow harvest but he was screaming at some points and they needed to make sure he was ok. They wanted to do an X-ray so he got all wrapped up since he had to leave his room and away we went down stairs. Now this kid has been put through the ringer and remember I said how protective I feel right now so when we got to x-ray I never thought this would be the moment I would lose it. I mean it’s an X-Ray…big deal right? As I laid him on the table the two techs were in the room with us. The one came right over to him and just very quickly pulled his pants down to expose his private area. Now I know they had to do this but as he was laying there and the tech had to put tape across his scrotum to protect him Eli just looked at me. I am sure he could not possibly understand why they were doing this and why he was naked. I am emotional just thinking about it. So there he is my precious baby boy staring at his Mommy while he is laying there naked and I was fighting back the tears. All I could think of is how much he has gone through and how much more he will have to go through, how strong he is, how brave he is and how it will be my goal for as long as I am alive to make him happy, to make him smile and bring joy & laughter into his life. After the X-ray I came back up to the room and went to the bathroom for the next half an hour to cry. All these emotions of what these kids have to go through hit me like a ton of bricks. I was heartbroken and for the rest of the night I allowed myself to feel angry, sad and lose my focus just temporarily so I could feel sorry for my babies.

Maybe, just maybe this journey will help another family, maybe it will bring MLD gene therapy to the USA (Where it should have already been). I don’t know all the maybes that might come of this but I do know that MLD has made me a different person…I can’t look back for the old me anymore because she is gone. I think when you go through tough times it may not necessarily change you as much as reveal who you are and who you were meant to be.

Posted in Milan

Believe

•May 27, 2013 • 2 Comments

Some days you just want someone to be able to make it all better …you just want that person who really loves you and cares about you to be able to take away all the fear, sadness and most importantly the unknown. I so wish there was that person but as I am learning there is not any one person who can take anything about this journey away yet there are so many people who make it more bearable.

It is amazing to think this but this past week was 8 months since Eli was diagnosed with MLD. I am sure many people can relate with a date that sticks in your head and what you remember from that day. I am not extremely good at remembering what happened yesterday but I can remember everything about that day. The weather…my dream the night before…the wait to get the MRI…the fear when people suddenly started avoiding our gaze in the waiting room as we were wondering what was taking so long…the phone call saying the doctor wants to see you before you leave…seeing my baby laying there waiting to wake up as we were waiting for the doctor and most importantly the walk to the room to hear the diagnosis…I remember it like it happened yesterday….I also remember the slow ride home and the thoughts that went through my head…the barely there conversation with Hut, not knowing what to say…looking at my precious Eli in the backseat , knowing he has no idea what is going on and wondering how long I will have left to snuggle him, say his prayers with him and have him call me Mom.

From the beginning Hut and I used to wonder how people would react…we were now the downer family who had a “sick” kid. How would friends and family react?? I remember feeling bad for them …who knows what to say?? I know I still don’t know what to say!  It’s funny what we thought at the beginning, and it’s interesting to see how differently we think now. These kids are gifts, who are here to teach a lesson …only God knows that lesson and to each person they come in contact it will be a different lesson or it will be for a different purpose. I believe this with all of my heart. I have seen Eli alone touch people who barely know him and I feel blessed to call him my son! WOW! How amazingly far we have come in 8 months!

That being said I want to explain something to those who may be new to our story or more importantly new to their faith in God or straying from him. Eight months ago after diagnosis we came home and I got on Facebook…I found Amazing Sam who had MLD and had a bone marrow transplant. I emailed his mom and got a response right away. Jolene was an awesome Mom with great advice and was there to answer any question I had. Right away she told me about Amy Price who had 2 precious babies with MLD…she said Amy & Brad got their youngest son treatment in Milan. OK I contact Amy & she was so so helpful…giving me all of Dr. Biffi’s information in Milan. Immediately we contacted her and sent her Eli’s MRI along with blood work results. She replied fairly quick that they could not treat Eli…his MRI looked bad and he had juvenile MLD. SHIT!!!!!!!!!!!!!! Back to the drawing board…After much research we decided against bone marrow transplant. Just our personal decision and everyone has a choice. Ours was not going to be BMT. We got the others tested and the day Ella tested positive was not an easy one at all but after I slept on it I knew we had to contact Dr. Biffi again. I remember almost begging her…please think about it now that Ella was diagnosed. After what seemed like forever she agreed to have a neurologist write a report on both of them to let her know “clinically” how they were doing. We got our appointments and off we went. The neuro was amazed at Eli thinking that due to his MRI he should be in bad shape. Ella had a totally normal neuro exam and Eli was not too far from that. We asked that he write a report so we could send it to Milan. By now it is mid-October. I found out two days before Halloween that the report was done. I was so scared to read it and had to read over & over before realizing it was just what we needed to send to Milan. The next morning Dr. Brogan sent it off. After almost a month of waiting …and let me tell you it was not a great month…we got the email saying that they would see evaluate them both in Feb. OMG…GREAT news but another two months of trying to keep him stable. I am not in control…I can’t change this one way or another… that was one of the hardest things to learn. Feb 8th came quick and we were off to Milan…The first day of evaluations went great and I think they were very surprised to see how good Eli was. He did great with all the tests except the nerve conduction test and they were a bit disappointed. I was scared…would this affect their decision? We met with the doctors Thursday and learned that we had to wait another two months to see if they would accept him. Once again…more waiting…how could I do this… it’s like a slow torture…and once again it is out of my control. Back home to wait and as you wait you just go through the motions of life waiting for the time to pass because your mind is just not there. I knew anything could happen in the two months we were home but I prayed all would stay the same! April 22nd came quick and I knew he seemed GREAT! We got to Milan and he did just as well on all his tests as he did in Feb! After a long week of waiting we found out they would treat him. It is still weird to write those words as the past 8 months we have fought so hard and now it is here and he will have a shot at life. UNBELIEVABLE!!!!!

As I started this before I came to Milan… I can now add another amazing thing. Today we had Eli’s neuro appointment and as I watched him run down the hall, hop in a square, touch his finger to his nose (along with many other things) I felt that he seemed exactly the same as Feb! After about a 20 minute check up the doctor said just what I thought…NO CHANGE!!!! I remember thinking as he was running down the hall to grab the elevator how lucky I felt. I can’t explain it and I don’t think the doctors can either…he is just unexplainable. To me he is a gift… a gift that I am so grateful to accept! Thank you God!!

It’s truly incredible how the plan is perfect…even if it doesn’t turn out the way we want, there are many things that come from this perfect plan that can not only change our lives but the lives around us. Be open to the mysteries of life that surround us every day…you never know what you may learn.

Posted in Diagnosed

The journey begins

•April 25, 2013 • 15 Comments

As last night came to an end I was lying in bed with Eli and I was asking him how his boo boo felt where they took the aspiration (his hip pelvic area) anyway…he was saying he felt fine but did not want to go back to the hospital anymore for any more needles or tests. After that came a slow quiet weep and it was a true cry…a cry that would make any parent cry right along with them. As I tried to hide my face I really couldn’t and when he was my tears he just hugged me. At that point I told him I would be right next to him through all of this and that I was so proud of him. I told him so many people at home are so proud of him and are praying for him to be as brave as he can be. That put a big smile on his face! I have to say, at 7 & ½ I know he understands but I don’t know how much so I feel there is a fine line with what I can say. This is where you just trust your job as a parent and try to do the best you know how at that particular moment! As my dad would always say “kid’s don’t come with instructions” and situations like this definitely don’t come with instructions either. I have always said that my kids will be in therapy for something when they get older but I know it will never be over wondering if they were loved!

As you can imagine there have been a lot of emotions leading up to this trip to Milan. I am trying so hard to just take one moment at a time but sometimes life just gets the best of you and sucks you in to all the emotions that we are made of. We had a Buona Fortuna party for Eli & Ella to say good luck …it was a wonderful party with many people showing up to wish us well. The kids really did not ask too many questions about why we were going for so long they were just happy that they were done school for the year!! Ahhh…what  a nice feeling to be that excited an innocent. I remember a few times breaking down for a minute of two at the party…maybe seeing the kids with one of their friends from school, the photo booth pictures and sometimes just looking at Eric and Evan…noticing how tall they were or looking at the smile on their face. Would they be much taller when I get home?? Would that smile remain for the time I am gone and how can I help them make the best of this situation….so many thoughts running through my head. As we all know the anticipation of life and things we fear is normally much worse in our mind than the actual thing. I had to keep focused on that!

So…now the trip…the day and moment we have been waiting for…we have waited 7 months for the possibility of having hope…we have asked thousands to pray and believe with us that this dream would come true…here it is now standing right in front of us…how exciting!!!! Yes I am scared to death and don’t know how it will all work but I am hopeful that I will go home with 2 children that now have a shot at life! When you think about it, it is NUTS!!! A clinical trial where 9 children have gone before (and I thank them all) in another country…this is stuff you read about not stuff that happens to you. Well, it is happening and I am embracing it as best as I can.

It was much more comfortable arriving at the airport this time although the passport line was brutal and the kids were wiped out!!! Hut rented a car this time (crazy us) so after the long wait we found our car (9 person van) and headed out. OMG thank God for GPS even though we had no idea really what we were doing. After getting lost only a couple of times we found our new “home”. Bringing 7 bags up was not the easiest especially in an elevator that fits 4 people maximum! Before we could bring our bags up we had to see our room. Let’s just say that there was no way it would work. It was a room with two floors and a small spiral staircase to go from one to another. It was small enough that no luggage would fit. So…I said we need another room and magically they found a one bedroom apartment for us. They brought two more single beds up and we were now in our new home!

After a few hours of unpacking we decided to venture out. We need to fill our microwave sized refrigerator with whatever we could find that they would like. Thank goodness I packed a whole suitcase of food for them that I knew they would enjoy! In the next two days we found our way around a bit more, were shown the local mall and grocery store thanks to another gene therapy family who was here getting a check up (Thanks Kim) and slowly started to get used to the time change! UGH!! The first three nights the kids did not fall asleep until after midnight!

Monday came quickly and thank goodness our first appointment was not until 11:30. As we did not know what to expect the first day we were just leaving our minds open to whatever. We met with Dr. Biffi and her colleagues (there were many) and it was a great meeting. I think they were very happy to see Eli doing so well! As Hut and I were going over treatment Dr. Biffi and the neurologist took Eli for a quick motor skill check to see how he fared from last visit. He was not gone long when he came back and they said he did great! No changes and he actually improved one point on one of the tests! YAY!!! My heart was singing!!!! This was a good start to the trip! Tuesday was blood-work, EKG and chest X-ray for Eli. Yes Ella cried and even Eli did this time … but I look at it like they will never have to do that one particular thing again:))) Poor Ella did her testing with a fever…don’t know exactly what’s wrong but some kind of virus and cough…poor baby…thank goodness she was done on Tuesday. Eli went back Wed for his bone marrow aspiration and he was not happy with not being able to eat but Hut took him and said he did just fine. I forgot, Tuesday he also had his appointment with his psychologist and he did great! NO CHANGES!!!! YAY!!!! Another good thing!!

So as I write this it is Thursday morning in Milan and we have the day off…tomorrow too. It is Holiday here in Milan and a perfect time as Evan & Mom-Mom just landed and we can now spend the day together…tomorrow too! I need to figure out how to do all of this on my own as Hut is leaving on Sunday. I don’t want to keep the car as this place scares me to drive. All the cars are tiny tiny and ours looks like a monster. (as we found out the first day when Hut swiped the side molding off of the car by swiping a pole) At least it is something I can still laugh about. (not him though).There are really no lights just round abouts (like Jersey circles) and the drivers are a bit on the crazy side! We will venture out to make sure I have the metro down pat and hopefully get the internet set up so I have it when we are in the hospital. (The important things;)

Most importantly I feel good… I feel good knowing we are in the best possible place for us right now and I promised myself that despite any negative feelings I will make this as happy as a time as I can. Lots of goofy dancing, games in the hall, races to the laundry, and plenty of snuggle time:)

Off to the mall where you pay for your cart and grocery store where you pay for your bags (all the little things we are learning about Milan) Going to try to show Evan & Mom-mom around today.

As I finish writing I am feeling grateful and happy today so I am enjoying the moment. Realizing how far we have come on this journey so far and being grateful that the Doctor from Dupont was so grave with her diagnosis. As Hut said if she did not make us think that it was so bad we might not have fought so hard and quickly for where we needed to be! Yes…its true… sometimes when you are going through a situation and it seems so dark and you don’t understand why a particular thing has happened or is happening people say maybe someday you will see the reason…I can now see that God only allows us to see what truly was meant to come from a situation when we can step back and look at it without the emotion that we have when we are going through it.

Posted in Diagnosed

Feeling it all

•March 7, 2013 • 5 Comments

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 20th. 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 8th 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

Waiting

•February 22, 2013 • 11 Comments

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

Emotions running wild

•February 7, 2013 • 7 Comments

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

Closing in

•January 7, 2013 • 1 Comment

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

Unspoken bonds

•January 1, 2013 • 2 Comments

 

One thing I have learned in life is there are many different kinds and types of relationships. Family, friends, neighbors, co-workers…the list goes on and on. If you are lucky, you will have a little of all these types along your journey and some relationships may even teach you some pretty amazing things if you are lucky. I happen to be a pretty lucky person lately when it comes to all these types of relationships…or maybe I am just aware of everything so much more…either way it’s pretty cool to be able to be present and find the gifts that each relationship brings.

My kids have been blessed from the beginning of their life. We have lived in the same community, they have gone to the same school and they have made some awesome friends that will hopefully last a lifetime. They don’t even realize what this is about right now because they are so young but as their Mother I see it and it makes me so happy.

When you have the time to enjoy the moments you have with people you will see that there is something so unique that you get from each person in your life. From the most mundane thing to the biggest and best thing you could imagine. Everyone here serves a purpose in the grand plan…thankfully I have recently realized how many special people are not only in my life but my children’s lives as well. They are truly blessed!

Almost 8 yrs ago when I was pregnant with Eli our friendship with some neighbors quickly moved to not only being friends with the parents but also our children becoming friends. Every week of my pregnancy I would see the kids and they were so excited to see what I was having. Quickly there was a bond forming even before Eli came into the world. After he was born the bond continued and not just with Eli but all the kids got closer. There were many nights spent together hanging out and making memories. We would always comment how unusual it was that our kids (7 in all before Ella) got along so well …there was very rarely if ever a problem. Now you add another neighbor with 4 kids (2 of who would also hang out with our kids all the time) and the group was awesome! Ella came along a short time later and she fit right in with all the others in the neighborhood. They all carried her around everywhere, including her in everything and I am pretty sure when she was a wee 17 Months old she hung with the rest of the gang on New Year’s Eve…she was a trooper and the bonds kept growing. I would always sit back and be in awe of what I would witness when we all would be together…no fighting, big kids helping the little ones, everyone including everyone…these were some pretty awesome kids. Not really something you would expect from kids whose age span now from 4-16. I always felt lucky for the bond they all had and as I would see this past year their bond would go deeper even though much of it might be unspoken.

When bad things happen it sucks and people rally around that family …unfortunately in our neighborhood we have had a hell of a year and we all need a lot of rallying. The bond that started so innocently years ago over smores, vacations and late nights hanging out has now taken on a different meaning. You see, kids should not have to grow up so quick; they should not have to worry about the future of a sibling or a parent having cancer. It just is not fair! If you know me you know I believe in God and I also believe in a plan… I don’t understand that plan and I get angry at that plan sometimes just like everybody else but I do know there is a reason for everything. I find it amazing that as close as we all are that our families are all going through such a trying time …and at the same exact time. How amazing that God has it set up so that they all would have each other to get through these tough times!

This weekend I watched as “the big kids” put aside any plans they may have had to have a fun day with my kiddos. A three-hour trip to Arnold’s where they walked them around, played laser tag, rode rides and won tickets galore! What memories were made!!! Eli and Ella could not have been any happier (especially when Ella won the jackpot for 5,000 tickets).  Watching these kids enjoy my kids and truly love them …it just melts my heart. The kicker of the whole weekend for me was New Year’s Eve. I speak of this unspoken bond, a knowing somewhere in all of them that they are all going through something that could forever change their life and actually already has. A feeling that hopefully all of them have… that they will all have someone to be there for them if and when they need it., even if they can’t speak of it. I watched New Year’s Eve as these kids who suddenly had to grow up a bit quicker than normal this year could lose themselves in a Juke box and a microphone for just a few hours. I sat and watched every one of them just be a kid…hopefully enjoying the moment (not to mention trying to kick my butt in a singing competition) what a gift to lose oneself in the present moment and be thinking of nothing other than that! It brought tears to my eyes.

When I speak of relationships teaching you things, this is the prime example. I have learned so much from watching these bonds form and just appreciating everything that is in front of us. Not knowing what tomorrow will bring for anyone but enjoying the moment of today! I know my kids have many people on their side but the bond that they will have with these amazing kids and their families can never be broken! I believe in my heart that they will always be there for each other no matter what path their journey takes them on. For that I could not be any more grateful!

Posted in Along the way

Expectations… let them go…

•December 27, 2012 • 1 Comment

When last Christmas was here I never thought about this year …my expectations were that I would be with all my family this year…the same as every other year…boy can life change a ton in a year! 

I knew along with the stress that comes with the Holidays I would be dealing with two other very sad things this Christmas… MLD of course, and the unfortunate loss of my dad on Feb 10th of this year. It’s funny how when you lose someone who is close to you it takes what seems like a year to grieve all the firsts without that person. Well, when MLD came into our lives the grieving seemed to switch from my dad to my kids. Trust me it’s not what I wanted but it is what happened…until Christmas that is. This was the last time I saw my Dad healthy, the last time he was ever with my kids and the last time my life was “normal” before the start of the worst year of my life. Christmas was not something I was looking forward to!

Am I allowed to say that I feel relief that Christmas is over? Well, I am saying it and it I could not be any happier…although typing this it sounds so mean to think that way but it has nothing to do with God or people or my kids it purely is about the expectations that I put on myself that are so unrealistic during the Holiday Season…maybe now I can go back to the only slightly elevated expectations that I put on myself.

I have always had a plan for certain things in my life… but especially during the Holidays. It starts with Black Friday shopping… next come the decorations (inside & out) Yes I am a bit of a freak… I LOVE my blow ups, candy canes, lights, signs…etc… It definitely is not for everyone but it is for me. Maybe because this is the first “house” I ever lived in and it is mine to do with what I want. Maybe because deep down I feel like I am still a young child and I enjoy the things that little kids enjoy. One thing I know is I will never truly grow up in some ways, and that makes me happy.

The Christmas card… who doesn’t want their card to be perfect? I know I do. The presents… I have to be done shopping with enough time to bake and if you know me you know I love to bake! I need weeks to bake! The advent calendar, the stocking, the Christmas picture with Santa! UGH!! I have to stop here… I swore that until Eric went to college I would be at the King of Prussia Mall getting their picture done. Yes, I was a bit obsessed.

I can break here and say that none of this went according to plan this year… It was definitely not on target to be one of my better Christmas for many reasons. I did not do my blow ups (until WOW brought us a train) I was not going to do the outside house lights (until Verruni Landscaping came and decorated the whole outside of my house) I got my tree about a week before Christmas, the card got done and mailed out the day before Christmas Eve, presents were bought on Christmas Eve…we wrapped till almost 3 am Christmas morning… YUP… nothing seemed to be going as I had hoped and this year the expectations were that much higher.  The thing that brought me great frustration was the fact that I did not get to the mall to see Santa. I am actually still having ill feelings about missing that moment as I will never get it back. Yes, no one knows what next year will bring but most of us don’t ever go there because we assume that life will be as normal as it is today. Anyone who has ever had anxiety knows the feeling that goes through your body when you feel totally not in control of anything and this is why I have to let it go… it cannot be changed and it is doing me no good dwelling on it. Nothing ever goes as planned and I will plan as little as I can for the rest of my life.

All this being said, and if I am being completely honest with myself, I have to admit that none of those things that meant so much to me really ended up meaning what I thought.  Every time I think I know what matters or when I think I have nothing new to learn from a situation, God finds ways to bring me right back to the core of what is important.

My tree does not have to be perfect, cards can arrive late, if I shop late there will still be present’s on Christmas, I can bake more after Christmas day, my house can look amazingly different for one year (and make my neighbors happy) If the elf doesn’t move one night my kids will survive…someone was bad right?? Maybe they will think it was them and be good…..LOL!!!!

This disease has changed us all in so many ways and reflecting back on the last two weeks I actually can see that I enjoyed things a bit more… despite believing I would need perfection to make the best memories this year.  We went to parties, didn’t worry about when things got done as we just knew it would happen and most importantly we learned that change is ok.

Life is not a given on any day, so if the day went well and the kids are healthy, it was a great, successful day! “Be open to whatever comes my way” this is what I tell myself and it’s amazing how many things do come my way when I open myself up to it.

Posted in Diagnosed, My journey

Tomorrow

•December 19, 2012 • Leave a Comment

 

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 20th. Three months since diagnosis date of Sept 20th. 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

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